Well I guess the doctors were right...there is nothing you can do to help your RBC's. Brian had to get a transfusion today. Now I feel guilty that the steak didn't work and I raised his cholesterol (vegetables for the rest of the weekend). It has worked in the past but not this round.
What is ironic is that the place I'm interning at for the summer hosted a blood drive today. So while Brian was having his blood transfusion I was donating. It felt pretty good knowing that while he was getting blood I was helping someone else. It is so easy to donate blood and you can help so many people out. It meant a lot that although I have been there 8 weeks everyone chipped in and donated blood to help out a good cause. We are very blessed that so many people want to help.
Brian was pretty run down the past two days so the blood couldn't have come at better time. Hopefully, tomorrow he has a little more hop in his step.
Our trip to Iowa City went well yesterday. We really don't have much news share. It was a LONG trip but very helpful. We are blessed to be in the care of many good doctors. Brian was able to grab some pizza from Wig & Pen.
Thanks for the continued prayers and support, you all are TRULY God's angels.
Hopefully Brian will feel better and will be able to write some more insightful things then what I can! He is a pretty amazing person.
Thursday, July 29, 2010
Monday, July 26, 2010
I have discovered the key to RBC recovery
The week after chemo Brian's cell counts drop. I give him a shot daily for 7 days to boost cell growth however Brian has trouble with his Red Blood Cells. RBC's have hemoglobin which bind oxygen that is carried all over the body for oxygenation. When Brian's RBC's are low he gets tired, sluggish, fatigued, short of breath, etc. The blood transfusion helps but I would like to go with minimal transfusions as possible. Medically, we were told there is nothing you can do to help stimulate RBC's, however, after every round except for the first one and third one I have fed Brian well cooked (he can't consume raw meat) steak for 2-3 nights in a row. Every time I have done this he has escaped a blood transfusion so I think it works! :).
Friday, we had flat iron steak with grilled veggies, sat. he had a big juicy burger, and tonight he had steak with Maytag blue cheese, balsamic beef sauce, acorn squash, and fresh steamed broccoli. YUM! I actually don't eat much red meat but every 21 days I do! Steak for 2-3 meals is outweighed by the tremendous amount of BERRIES, salads, and fresh vegetables he eats for the other meals. If we have a slight increase in our LDL's we will know why.
In other news, Brian is doing well. He has been having some jaw pain which is a side effect of his shots. That usually subsides when he is done with all of his shots. He has only been tired and fatigued when we have been out grocery shopping or at the farmers market. He was even able to take the garbage out as well as unload the dishwasher... YIPPIE!
I wish I could post more pictures but we are having technical difficulties with our camera (and our Garmin so if we don't make it to your event that is why!) If you are technical person please lend your expertise. Below are some pictures that I have stolen from facebook.
This is my best friend Abby, she has been awesome. She came one weekend when Brian was in the hospital and hung out with me. It was nice to have someone there to visit with when Brian was sleeping. We got pizza, ice cream, subs, movies...had fun!
Brian and I stopped for a pose during dancing!
The beautiful bride and my college roommate FIDD!
Abby, Garmen, and I! Gar Gar Binks lived next door to us in college. She mailed us cookies so that we got them the first day Brian got out of the hospital after round 1.
Our friends, Nic and Jessica, had a photo booth at their wedding!
Group shot at Nic and Jessica's wedding.
Who knows what we were dancing too, but it clearly it required focus!
Brian and Chad!
Hopefully, I can steal some more pictures or figure out our camera.
Friday, we had flat iron steak with grilled veggies, sat. he had a big juicy burger, and tonight he had steak with Maytag blue cheese, balsamic beef sauce, acorn squash, and fresh steamed broccoli. YUM! I actually don't eat much red meat but every 21 days I do! Steak for 2-3 meals is outweighed by the tremendous amount of BERRIES, salads, and fresh vegetables he eats for the other meals. If we have a slight increase in our LDL's we will know why.
In other news, Brian is doing well. He has been having some jaw pain which is a side effect of his shots. That usually subsides when he is done with all of his shots. He has only been tired and fatigued when we have been out grocery shopping or at the farmers market. He was even able to take the garbage out as well as unload the dishwasher... YIPPIE!
I wish I could post more pictures but we are having technical difficulties with our camera (and our Garmin so if we don't make it to your event that is why!) If you are technical person please lend your expertise. Below are some pictures that I have stolen from facebook.
This is my best friend Abby, she has been awesome. She came one weekend when Brian was in the hospital and hung out with me. It was nice to have someone there to visit with when Brian was sleeping. We got pizza, ice cream, subs, movies...had fun!
Brian and I stopped for a pose during dancing!
The beautiful bride and my college roommate FIDD!
Abby, Garmen, and I! Gar Gar Binks lived next door to us in college. She mailed us cookies so that we got them the first day Brian got out of the hospital after round 1.
Our friends, Nic and Jessica, had a photo booth at their wedding!
Group shot at Nic and Jessica's wedding.
Who knows what we were dancing too, but it clearly it required focus!
Brian and Chad!
Hopefully, I can steal some more pictures or figure out our camera.
Sunday, July 25, 2010
Great Weekend
We have had a great weekend so far just laying low, watching a lot of movies and going out to eat with friends. I have really really enjoyed being home from my 5th round of Chemo. "On Friday we went to the movie Inception and then came home and watched movies at home. It was a really fun lazy date night! On Saturday we went to Jethro's BBQ with our friends C.J. and Sonja and had a great time. I love Jethro's BBQ because I get to decide how much sauce I get to put on my meal. Anyone that knows me knows I love condiments! And due to the Steroid that I am on I am constantly hungry too. Don't tell Stacey but I was sneaking some chips, salsa, crackers and Maytag Blue Cheese last night while I was watching Man vs. Food. It was awesome!
I have been getting tired pretty easily and have taken a lot of naps. It is too early to tell if I will have to get a Blood Transfusion or not. My Hemoglobin numbers tend to drop more by Tuesday - Thursday. Hopefully my body can handle it and I won't need to get another one. But if I do that's ok because Transfusions always make you feel better. On Wednesday we will got talk to an Oncologist in Iowa City about finishing up our treatment plan. One thing I have learned is that it is always a good idea to know what all of your options are and to make an informed decision about what to do. I am excited to go to Iowa City because maybe we can go eat at Whig and Pen and see The Kinnick Stadium!
By the way the Cubbies have won 6 out of 9 since the All Star Break and are going for the sweep of the Cards today! Go Cubs Go!
41 days til Hawkeye Football!!!! Go Hawks!
I have been getting tired pretty easily and have taken a lot of naps. It is too early to tell if I will have to get a Blood Transfusion or not. My Hemoglobin numbers tend to drop more by Tuesday - Thursday. Hopefully my body can handle it and I won't need to get another one. But if I do that's ok because Transfusions always make you feel better. On Wednesday we will got talk to an Oncologist in Iowa City about finishing up our treatment plan. One thing I have learned is that it is always a good idea to know what all of your options are and to make an informed decision about what to do. I am excited to go to Iowa City because maybe we can go eat at Whig and Pen and see The Kinnick Stadium!
By the way the Cubbies have won 6 out of 9 since the All Star Break and are going for the sweep of the Cards today! Go Cubs Go!
41 days til Hawkeye Football!!!! Go Hawks!
Thursday, July 22, 2010
chapter 2 of the view of cancer from the passenger side
This is a continuation from last Tuesday 7/12/10.
I don't want to bombard you all with posts nor do I want take away from Brian, but I do want to finish what he asked me to do.
So I left off after when we first found out Brian potentially had cancer and how we spent the first weekend trying to understand what was going on as well as trying to come to terms with the news we just heard.
We found out April 1st, met our oncologist April 2nd and by Monday April 5 we met our surgeon and were having a lymph node biopsy. On Monday we went in for pre-op meeting and Tuesday we had surgery. After meeting with the surgeon we decided everything was REAL and it was probably time to inform Brian's parents on what was going on. We had them come to Des Monies Monday night and sat them down to tell them. It was hard, how do you tell your parents you have cancer? For that matter how do you tell anyone you have cancer. Calling our closest friends was difficult, how do you start the conversation Hi, you got a promotion at work awesome, well I have cancer. Can someone please write a book on this!!! Everyone reacts differently and it is hard. Anyways, it was pretty evident Brian's parents were in shock and all I remember them saying is we don't know for sure, in my head and Brian's we knew for sure. After seeing the MRI it was pretty evident something was going on and it was serious.
We woke up EARLY Tuesday morning for surgery and being as organized as I'm I set out out all of Brian's clothes, I rented 4 movies, bought Gatorade, jello, had a puke bucket, towels, everything (even a blow up mattress in the living room for his parents to nap on as they watched him when I ran to school to study for a test). I was prepared! We checked in at the surgery center and they allowed me to sit with Brian in pre-op. As they got Brian ready for surgery the nurse told him to change out of his clothes but he could leave his boxers on and socks. Brian with deer in the headlight look turned to nurse and goes..''ahhh I forgot underwear today!" YES I had set them out the night before and for some reason he put everything on but his boxers, why? They nurse laughed and walked out. They took him back and I went to sit with his parents in the waiting room. An hour later they surgeon sat me down and told me they were able to confirm it was lymphoma. I liked that they told me separately because it allowed me to gather my thoughts on my own. My life was about to change and I needed a moment to digest it all. We took Brian home and let him recover, AKA watch sports ALL day. He recovered well from surgery and by the wed. afternoon was able to return to work (p.s. Brian makes all of this seem easy but don't let him fool you it is not he is just an amazing person and can handle all). The rest of the week went on as normal, I had to change his bandage 2 times a day and that was pretty easy.
We continued to lay low Friday after Brian's surgery just enjoying each other's company and talking about creating our battle plan to beat this. We went to bed early because Brian had to work sat. morning and I had to go into school to practice for a practical. Sat. morning we both got ready and were ready to leave when Brian said he didn't feel good. I told him take some Ibuprofen and go to work. I got in my car, sat, thought about it and I got the idea to go in and take his temp. WHY? I have no clue, but I think back to what if I hadn't. When I went in his temp was 100.4 ( I will never forget). I told him NO WORK, called my sister and she said be safe and take him to urgent care. Thank God our family doctor was covering urgent care and was able to see Brian. By the time I got Brian to the doctor, he could barely walk, he was white as a ghost, tired, and short of breath. The office was literally 5 min away and we waited maybe 10-15 min. When Brian was called back and they took his vitals his temp rose to 103.6. WHOA! I was freaking out inside, heart racing, palms sweating, stomach in knots (we all know 103 is not good). Our doctor thought perhaps his wound was infected so he put him on antibiotics and sent him home. I then spent the next 5 hours trying to break his fever which by the time we got home was 104. I laid him on the couch and began putting everything in the freezer on him. He had corn on his neck, broccoli on his chest, cod in his armpits, chicken on his thighs, etc. He was so HOT the vegetables were completely defrosted and mush within 10-15 min. He had be given fever reducer but it hadn't kicked in. I was force feeding him Gatorade every 5 min he had to drink a 1/4 of the bottle. Every 10 min I changed the frozen food on him. He thought I was crazy running around like a mad women but I knew if it went any higher he was going to the ER. When Brian was a child he had fever convulsions and loss consciousness and had to be resuscitated, add this to the million things running through my mind at that moment. I'm CPR certified but when it is your own husband you are looking at you forget everything. All I could think about were the steps to CPR, I was googling it, shoving Gatorade down Brian's throat and changing frozen food on the family jewels all at the same time. I felt like I was in a circus with 100 balls in the air trying to juggle. Once his fever broke (well was at 100) I sat down exhausted! I then realized how real this was, this was our life now, I wasn't ready to be the caregiver but had to be, and I was SCARED. I'm 24 my husband has cancer, has high fevers, I'm in school, my husband is my only income, HOW AM I GOING TO SURVIVE?
That weekend was and has been the worst weekend by far through all this. I never could have imagined that someones health could change so drastically so fast. I was literally scared. I will never forget all the events of that weekend. It hit me like a brick how important the role of the caregiver is. You have to be the post to lean on, be positive/optimistic, have 100 hands to do 100 things at once, be flexible so you can be torn in a million directions, and yet take care of yourself. I said I do in sickness in health but I didn't know in sickness meant literally 2 years in to your marriage. God challenged me during this time. I didn't think I would survive and I learned from that day on that the road to beating cancer is not easy, but is doable.
Sunday Brian and I woke up to soaked bed sheets. His incision was leaking...and I mean leaking. We couldn't see the surgeon till Monday so all day I had to change his bandage. By all day I mean every hour and with every hour he had to throw away the shirt he was wearing because it was destroyed. I thought I finally conquered the fever the night before only to wake up to the next hurdle.
We saw the surgeon Monday and he took specimens of the incision. He informed us that if Brian did have an infection it was not in his wound, which meant it was somewhere else. If I hadn't been a clean freak before, this now meant I was a super clean freak. Now, I was skeptical of anyone being near Brian because everyone was a GIANT GERM. My hands smelled like bleach for a week. Everything top to bottom I vowed would be germ free (I quickly learned this is a impossible task and it did not last long, I'm still a clean freak not a super clean freak).
The next few weeks we spent in and out of different doctor's offices while we waited for Mayo to diagnose Brian with his specific type of lymphoma. By then I was a pro at going to appointments. Hint to all caregivers/support personal take an IPOD with you. It would be so nerve racking sitting in the lobby because it seemed like everywhere we went the news got worse. So I found the IPOD to be an excellent tool to distract Brian from thinking about what was to come. We found out from the PET scan that he was at least stage three because it was widespread...by the end of the diagnosing period he was stage 4. In the mean time we were set up with a fertility doctor. With everything going on Brian and I had serious life decisions to make. If there was a slight possibility of having children then we had to bank Brian's baby makers (PG). I was in school, could barely find time to cook for Brian now he has cancer and I have to decide if I want kids. Brian said after our first fertility appointment, "you know people say kids are expensive, but we are just talking about possibly having kids in the future and it is already costing me money. I'm renting them a frozen condo."
As things finally tamed down and we weren't at the doctor's daily ( still eagerly waiting for Mayo) Brian called me at school and said he had a rash. I stopped studying headed to his work to look at his rash. Literally head to toe he had a rash. I called the on call doctor who told me it was a drug rash(I didn't believe this because he had been taking the drugs for over two weeks and had no reaction till then). I told him to go home and rest. By 3 am he broke out in another high fever and his rash was even worse. I immediately thought to myself this is starting all over again, I can't do this. Luckily, he responded well to the fever reducer (lets not support any specific brands here) and was able to go back to bed. Friday April, 23 was supposed to be my glorious catch up on sleep and school work day (no class!!!!) turned out to be 'go to the hosp. ASAP day'. I called our oncologist first thing in the morning to tell them about the rash, they said get here now, so with no shower we got there now. Mayo literally faxed over their findings at which our doctor told us what it was and he was now calling him stage 4. He said he did not want to wait any longer and admitted Brian to the hospital. We ran home grabbed the essentials and without eating or showering I drove him straight to the hospital (I didn't eat for almost 10 hours). He had to have some tests done and then was able to start chemo Friday night. I felt like so much had changed in 24 hours. We were whisked to the hospital and didn't have time to take in the news of stage 4. In the hospital we found out that Brian more then likely did not have an infection which was causing his high fevers but probably was experiencing tumor fevers. This literally was the first indication other then his lump on his arm that something was wrong.
As scary as stage 4 is and as much as I don't want it to be stage 4 I was relieved. It is so much EASIER knowing that for one week out of three I have a break. I don't have to be responsible for bleaching everything, I don't have to run to hy-vee for Gatorade and frozen food, I can continue school knowing someone else who is trained is watching over him. I literally had a weight lifted off my shoulder, it is selfish I know, but I realize this was God's plan because I would not be able to handle all of this. I praise God daily for all of the wonderful nurses, nurses aids, and doctors who look after Brian. They are saints. You don't understand how critical these people are in the world until to you rely on them.
I hope this helps people understand what it is like sitting on the passenger side. Sometimes I wish I could be Brian. Although, this is incredibly hard on his body and mental taxing you don't understand what it is like to be strong 24/7 and having the pressure on your shoulders. This is selfish I know but until you are in the passenger seat trying to keep things sane you don't understand. There is only so much my mom and dad can do and Brian's parents can do to relieve some of the pressure. I appreciate there help and appreciate whatever anyone else has done. I can only imagine what it is like to be a parent because I know that in my situation there is no one else that can take better care of Brian then me. I know I take on all the weight of the situation but I do so, and I think others in this boat would agree, because it is the only thing you can do. I can't wave my wand and make it disappear all I can do is suck it up and assume responsibility.
As a caregiver the hardest thing to learn is that at times you have to let go of control. You already have a big problem you can't control so you hold onto everything that you can control as a security blanket. I had to admit that I couldn't do it all and had to ask my parents to come up and clean my house, those who know me know this was hard because I love to clean. I felt horrible knowing I can't clean my own house right now because I have so much going on. Having someone come and clean my house and fold my laundry and put stuff away in different spots was difficult because I lost control of something that I actually could change. I can't tell you how much I HATED Hy-Vee the first few weeks. I was in that store daily usually twice a day getting perscriptions, food, Gatorade. People would offer to go and I would complain however I had to go. The only thing I could do for Brian is run those errands and as much as I hated that the checkers, pharmacist, and manager knew me becuase I was there constantly I had to do it because it was my way of controlling the situation. To everyone out there that is helping out a friend in a difficult time DO NOT TAKE OFFENSE when they freak out about you folding towels the wrong way or you putting a pan in the wrong spot. Really you did nothing wrong but the person literally loss control of one of the only things they can control and as stupid as it sounds it is a big deal mentally.
I look on facebook of all my friends who are getting married, having kids, going on vacation and as much as I would love to do that I can't. However, I must say I wouldn't change what is happening to Brian and I for the world. We have learned more the past few months then what some people learn in a lifetime and we are 24 & 25. People may think it is not a happy time but you create happy times and we are turning this into a positive time in our life. People don't grow when life is easy, you grow as a human when you are challenged. Brian and I have created a tight bond that is indestructible and I have learned more about myself, my faith, and my strength then what I ever thought I had. What I fear is that in the future when we beat this and life goes back to normal I will lose everything I learned. I don't want to go back to my mundane routine because I don't want to regress on the person I have become. What comes after beating cancer?
This is long, real, and brutally honest. I'm sorry. Brian asked me to write my view and this is what I had to say. Hopefully, someone else in my shoes can relate and hopefully it will open a window of insight to what it is like being the spouse of a cancer patient. You will never understand completely till you are there and if you are there; YOU CAN DO IT, YOU HAVE THE STRENGTH INSIDE, JUST BELIEVE IN YOURSELF.
Stacey
I don't want to bombard you all with posts nor do I want take away from Brian, but I do want to finish what he asked me to do.
So I left off after when we first found out Brian potentially had cancer and how we spent the first weekend trying to understand what was going on as well as trying to come to terms with the news we just heard.
We found out April 1st, met our oncologist April 2nd and by Monday April 5 we met our surgeon and were having a lymph node biopsy. On Monday we went in for pre-op meeting and Tuesday we had surgery. After meeting with the surgeon we decided everything was REAL and it was probably time to inform Brian's parents on what was going on. We had them come to Des Monies Monday night and sat them down to tell them. It was hard, how do you tell your parents you have cancer? For that matter how do you tell anyone you have cancer. Calling our closest friends was difficult, how do you start the conversation Hi, you got a promotion at work awesome, well I have cancer. Can someone please write a book on this!!! Everyone reacts differently and it is hard. Anyways, it was pretty evident Brian's parents were in shock and all I remember them saying is we don't know for sure, in my head and Brian's we knew for sure. After seeing the MRI it was pretty evident something was going on and it was serious.
We woke up EARLY Tuesday morning for surgery and being as organized as I'm I set out out all of Brian's clothes, I rented 4 movies, bought Gatorade, jello, had a puke bucket, towels, everything (even a blow up mattress in the living room for his parents to nap on as they watched him when I ran to school to study for a test). I was prepared! We checked in at the surgery center and they allowed me to sit with Brian in pre-op. As they got Brian ready for surgery the nurse told him to change out of his clothes but he could leave his boxers on and socks. Brian with deer in the headlight look turned to nurse and goes..''ahhh I forgot underwear today!" YES I had set them out the night before and for some reason he put everything on but his boxers, why? They nurse laughed and walked out. They took him back and I went to sit with his parents in the waiting room. An hour later they surgeon sat me down and told me they were able to confirm it was lymphoma. I liked that they told me separately because it allowed me to gather my thoughts on my own. My life was about to change and I needed a moment to digest it all. We took Brian home and let him recover, AKA watch sports ALL day. He recovered well from surgery and by the wed. afternoon was able to return to work (p.s. Brian makes all of this seem easy but don't let him fool you it is not he is just an amazing person and can handle all). The rest of the week went on as normal, I had to change his bandage 2 times a day and that was pretty easy.
We continued to lay low Friday after Brian's surgery just enjoying each other's company and talking about creating our battle plan to beat this. We went to bed early because Brian had to work sat. morning and I had to go into school to practice for a practical. Sat. morning we both got ready and were ready to leave when Brian said he didn't feel good. I told him take some Ibuprofen and go to work. I got in my car, sat, thought about it and I got the idea to go in and take his temp. WHY? I have no clue, but I think back to what if I hadn't. When I went in his temp was 100.4 ( I will never forget). I told him NO WORK, called my sister and she said be safe and take him to urgent care. Thank God our family doctor was covering urgent care and was able to see Brian. By the time I got Brian to the doctor, he could barely walk, he was white as a ghost, tired, and short of breath. The office was literally 5 min away and we waited maybe 10-15 min. When Brian was called back and they took his vitals his temp rose to 103.6. WHOA! I was freaking out inside, heart racing, palms sweating, stomach in knots (we all know 103 is not good). Our doctor thought perhaps his wound was infected so he put him on antibiotics and sent him home. I then spent the next 5 hours trying to break his fever which by the time we got home was 104. I laid him on the couch and began putting everything in the freezer on him. He had corn on his neck, broccoli on his chest, cod in his armpits, chicken on his thighs, etc. He was so HOT the vegetables were completely defrosted and mush within 10-15 min. He had be given fever reducer but it hadn't kicked in. I was force feeding him Gatorade every 5 min he had to drink a 1/4 of the bottle. Every 10 min I changed the frozen food on him. He thought I was crazy running around like a mad women but I knew if it went any higher he was going to the ER. When Brian was a child he had fever convulsions and loss consciousness and had to be resuscitated, add this to the million things running through my mind at that moment. I'm CPR certified but when it is your own husband you are looking at you forget everything. All I could think about were the steps to CPR, I was googling it, shoving Gatorade down Brian's throat and changing frozen food on the family jewels all at the same time. I felt like I was in a circus with 100 balls in the air trying to juggle. Once his fever broke (well was at 100) I sat down exhausted! I then realized how real this was, this was our life now, I wasn't ready to be the caregiver but had to be, and I was SCARED. I'm 24 my husband has cancer, has high fevers, I'm in school, my husband is my only income, HOW AM I GOING TO SURVIVE?
That weekend was and has been the worst weekend by far through all this. I never could have imagined that someones health could change so drastically so fast. I was literally scared. I will never forget all the events of that weekend. It hit me like a brick how important the role of the caregiver is. You have to be the post to lean on, be positive/optimistic, have 100 hands to do 100 things at once, be flexible so you can be torn in a million directions, and yet take care of yourself. I said I do in sickness in health but I didn't know in sickness meant literally 2 years in to your marriage. God challenged me during this time. I didn't think I would survive and I learned from that day on that the road to beating cancer is not easy, but is doable.
Sunday Brian and I woke up to soaked bed sheets. His incision was leaking...and I mean leaking. We couldn't see the surgeon till Monday so all day I had to change his bandage. By all day I mean every hour and with every hour he had to throw away the shirt he was wearing because it was destroyed. I thought I finally conquered the fever the night before only to wake up to the next hurdle.
We saw the surgeon Monday and he took specimens of the incision. He informed us that if Brian did have an infection it was not in his wound, which meant it was somewhere else. If I hadn't been a clean freak before, this now meant I was a super clean freak. Now, I was skeptical of anyone being near Brian because everyone was a GIANT GERM. My hands smelled like bleach for a week. Everything top to bottom I vowed would be germ free (I quickly learned this is a impossible task and it did not last long, I'm still a clean freak not a super clean freak).
The next few weeks we spent in and out of different doctor's offices while we waited for Mayo to diagnose Brian with his specific type of lymphoma. By then I was a pro at going to appointments. Hint to all caregivers/support personal take an IPOD with you. It would be so nerve racking sitting in the lobby because it seemed like everywhere we went the news got worse. So I found the IPOD to be an excellent tool to distract Brian from thinking about what was to come. We found out from the PET scan that he was at least stage three because it was widespread...by the end of the diagnosing period he was stage 4. In the mean time we were set up with a fertility doctor. With everything going on Brian and I had serious life decisions to make. If there was a slight possibility of having children then we had to bank Brian's baby makers (PG). I was in school, could barely find time to cook for Brian now he has cancer and I have to decide if I want kids. Brian said after our first fertility appointment, "you know people say kids are expensive, but we are just talking about possibly having kids in the future and it is already costing me money. I'm renting them a frozen condo."
As things finally tamed down and we weren't at the doctor's daily ( still eagerly waiting for Mayo) Brian called me at school and said he had a rash. I stopped studying headed to his work to look at his rash. Literally head to toe he had a rash. I called the on call doctor who told me it was a drug rash(I didn't believe this because he had been taking the drugs for over two weeks and had no reaction till then). I told him to go home and rest. By 3 am he broke out in another high fever and his rash was even worse. I immediately thought to myself this is starting all over again, I can't do this. Luckily, he responded well to the fever reducer (lets not support any specific brands here) and was able to go back to bed. Friday April, 23 was supposed to be my glorious catch up on sleep and school work day (no class!!!!) turned out to be 'go to the hosp. ASAP day'. I called our oncologist first thing in the morning to tell them about the rash, they said get here now, so with no shower we got there now. Mayo literally faxed over their findings at which our doctor told us what it was and he was now calling him stage 4. He said he did not want to wait any longer and admitted Brian to the hospital. We ran home grabbed the essentials and without eating or showering I drove him straight to the hospital (I didn't eat for almost 10 hours). He had to have some tests done and then was able to start chemo Friday night. I felt like so much had changed in 24 hours. We were whisked to the hospital and didn't have time to take in the news of stage 4. In the hospital we found out that Brian more then likely did not have an infection which was causing his high fevers but probably was experiencing tumor fevers. This literally was the first indication other then his lump on his arm that something was wrong.
As scary as stage 4 is and as much as I don't want it to be stage 4 I was relieved. It is so much EASIER knowing that for one week out of three I have a break. I don't have to be responsible for bleaching everything, I don't have to run to hy-vee for Gatorade and frozen food, I can continue school knowing someone else who is trained is watching over him. I literally had a weight lifted off my shoulder, it is selfish I know, but I realize this was God's plan because I would not be able to handle all of this. I praise God daily for all of the wonderful nurses, nurses aids, and doctors who look after Brian. They are saints. You don't understand how critical these people are in the world until to you rely on them.
I hope this helps people understand what it is like sitting on the passenger side. Sometimes I wish I could be Brian. Although, this is incredibly hard on his body and mental taxing you don't understand what it is like to be strong 24/7 and having the pressure on your shoulders. This is selfish I know but until you are in the passenger seat trying to keep things sane you don't understand. There is only so much my mom and dad can do and Brian's parents can do to relieve some of the pressure. I appreciate there help and appreciate whatever anyone else has done. I can only imagine what it is like to be a parent because I know that in my situation there is no one else that can take better care of Brian then me. I know I take on all the weight of the situation but I do so, and I think others in this boat would agree, because it is the only thing you can do. I can't wave my wand and make it disappear all I can do is suck it up and assume responsibility.
As a caregiver the hardest thing to learn is that at times you have to let go of control. You already have a big problem you can't control so you hold onto everything that you can control as a security blanket. I had to admit that I couldn't do it all and had to ask my parents to come up and clean my house, those who know me know this was hard because I love to clean. I felt horrible knowing I can't clean my own house right now because I have so much going on. Having someone come and clean my house and fold my laundry and put stuff away in different spots was difficult because I lost control of something that I actually could change. I can't tell you how much I HATED Hy-Vee the first few weeks. I was in that store daily usually twice a day getting perscriptions, food, Gatorade. People would offer to go and I would complain however I had to go. The only thing I could do for Brian is run those errands and as much as I hated that the checkers, pharmacist, and manager knew me becuase I was there constantly I had to do it because it was my way of controlling the situation. To everyone out there that is helping out a friend in a difficult time DO NOT TAKE OFFENSE when they freak out about you folding towels the wrong way or you putting a pan in the wrong spot. Really you did nothing wrong but the person literally loss control of one of the only things they can control and as stupid as it sounds it is a big deal mentally.
I look on facebook of all my friends who are getting married, having kids, going on vacation and as much as I would love to do that I can't. However, I must say I wouldn't change what is happening to Brian and I for the world. We have learned more the past few months then what some people learn in a lifetime and we are 24 & 25. People may think it is not a happy time but you create happy times and we are turning this into a positive time in our life. People don't grow when life is easy, you grow as a human when you are challenged. Brian and I have created a tight bond that is indestructible and I have learned more about myself, my faith, and my strength then what I ever thought I had. What I fear is that in the future when we beat this and life goes back to normal I will lose everything I learned. I don't want to go back to my mundane routine because I don't want to regress on the person I have become. What comes after beating cancer?
This is long, real, and brutally honest. I'm sorry. Brian asked me to write my view and this is what I had to say. Hopefully, someone else in my shoes can relate and hopefully it will open a window of insight to what it is like being the spouse of a cancer patient. You will never understand completely till you are there and if you are there; YOU CAN DO IT, YOU HAVE THE STRENGTH INSIDE, JUST BELIEVE IN YOURSELF.
Stacey
Round 5 is Done!
I am excited because I get to go home today from the hospital. Thanks to everyone that came and visited me while in the hospital or just said a prayer for me. I really appreciate it! And Jordan and Chelsea the food last night was fantastic!
It's always so exciting to go home after you have done another round of Chemo. You are excited to go home and sleep in your own bed, take a shower without being hooked up to IV's, cook your own homemade meals and get that good ol' butt groove working back in the sofa that has been missing you! :) But you are also proud of getting another round done. It feels good to know that I have 5 rounds done and that things are going well. By the 3rd or 4th round there are pretty much no surprises. I know exactly how I am going to feel on certain days and what I need to do to prevent from feeling too crappy. Stacey and I have the system pretty much down to an artform at this point.
In the beginning when I first got diagnosed all I wanted was just to be normal but I have found that you just create a new normal. Stacey and I were just talking the other day how routine it has become for us on these 21 day cycle treatments. Right now we don't any different. But with such good family and friends by our side it has made it much easier.
Round 5 is Done! Life is Good!
Brian Pritchard
It's always so exciting to go home after you have done another round of Chemo. You are excited to go home and sleep in your own bed, take a shower without being hooked up to IV's, cook your own homemade meals and get that good ol' butt groove working back in the sofa that has been missing you! :) But you are also proud of getting another round done. It feels good to know that I have 5 rounds done and that things are going well. By the 3rd or 4th round there are pretty much no surprises. I know exactly how I am going to feel on certain days and what I need to do to prevent from feeling too crappy. Stacey and I have the system pretty much down to an artform at this point.
In the beginning when I first got diagnosed all I wanted was just to be normal but I have found that you just create a new normal. Stacey and I were just talking the other day how routine it has become for us on these 21 day cycle treatments. Right now we don't any different. But with such good family and friends by our side it has made it much easier.
Round 5 is Done! Life is Good!
Brian Pritchard
Wednesday, July 21, 2010
Status Update: Sleepy
I'm pretty sleepy today so I am going to take a big nap. On every treatment you reach a point where you sort of run out of gas and need to take it easy. I think that today is that day. I stayed up until 10pm last night watching my Cubbies pull off a big come back victory against the Astros. (Maybe that's why I'm tired too.)
On Monday my Dad came and visited me and we had a great day just having some father and son time. We are both so proud of Mom and her recovery and I am the only one left to get better. Lets keep up the good work! Love ya Dad!
I have also started to read Lance Armstrong's book about his battle with cancer and it has been cool to get a different perspective. There is so much that we can learn about life through our trials and tribulations. We learn the most about ourselves and the others around us when things go wrong. I have learned alot from all of this already!
And another big Thank You to my wonderful wife. She is my support through the good times and the bad. She is my strength on days when it seems I have none and she is the light of my life. I love you honey!
GO HAWKS!
Brian Pritchard
P.S. Who is excited for Hawkeye Football season? Only 45 days, 2 hours, 1 minute and 35 seconds but who's counting.
On Monday my Dad came and visited me and we had a great day just having some father and son time. We are both so proud of Mom and her recovery and I am the only one left to get better. Lets keep up the good work! Love ya Dad!
I have also started to read Lance Armstrong's book about his battle with cancer and it has been cool to get a different perspective. There is so much that we can learn about life through our trials and tribulations. We learn the most about ourselves and the others around us when things go wrong. I have learned alot from all of this already!
And another big Thank You to my wonderful wife. She is my support through the good times and the bad. She is my strength on days when it seems I have none and she is the light of my life. I love you honey!
GO HAWKS!
Brian Pritchard
P.S. Who is excited for Hawkeye Football season? Only 45 days, 2 hours, 1 minute and 35 seconds but who's counting.
Monday, July 19, 2010
Passion Bucket
Hello Everyone and thank you for those of you who have been posting on my blog! It really gives me a boost every time I hear from and of my fantastic friends and family members. Currently it is 5:25 AM and I have been awake since about 4:50 AM. Many times I find my best ideas about what to write come to me in the dark of the night when the world is sleeping. It becomes easier to clear your thoughts when you are the only one awake. Here are my thoughts this morning that kept me awake.
On Friday I was told that the treatments are working but I will need to go through additional Chemo to finish up the job and be rid of this terrible disease for good. I would be lying to you if I said that I was overwhelmed and excited about this news initially. I thought about the fact that I would have to spend my beloved Hawkeye Football Saturday's hooked up to an IV receiving more Chemo. I thought about the weddings coming up in the next few months where I wouldn't be full strength and where I wouldn't be able to all of the wedding dancing that I love to do. I thought about how after each Chemo treatment you get a little be weaker physically and it seems to get harder to do the daily tasks that seemed so easy before such as house work, laundry, exercising and being able to do my job to the best of my abilities.
I thought all of these thoughts and then I realized that all of them had one thing in common, the word I. I couldn't do this or I couldn't do that. I was stuck on just me and how these extra treatments would effect my life. As I sit here in the Oncology ward it occurred to me that many of other patients and friends wouldn't be told that there treatments were working as good as mine and that they would be overjoyed if the doctor told them that they had a disease that was curable like mine. I realized how selfish I had been and quickly changed my views about the extra treatments that I would be receiving. Once you take the "I" or "me" out of the situation and think about others that aren't so lucky you see how little the "I" or "me" means in Life.
My degree is in teaching and one of the teaching sayings that would come up all of the time while I was at UNI was "Students will remember a fraction of a percent of the actual material that you teach them throughout there lives but they will remember 100% of the way that you made them feel." I think that this is true not just in teaching but in life. Making others feel good and special is the true meaning of life. In my moment of clarity I realized just how lucky I was that the treatments were working and that I had to work even harder to beat this not for me but for my friends, family and those less fortunate in the Cancer ward with tougher road to hoe.
In conclusion I am now fully ready to kick this 5th round of Chemo's butt and my Passion Bucket for life is overflowing!!!
"Life is 10% what happens to us and 90% how we react to it."
~Ed Thomas (the late great coach of the Parkersburg, Iowa Football Team)
I am humbled,
Brian
P.S. I cried when I wrote this sitting in my hospital bed at 5:25AM in the dark alone with my thoughts and it felt good to get it out.
On Friday I was told that the treatments are working but I will need to go through additional Chemo to finish up the job and be rid of this terrible disease for good. I would be lying to you if I said that I was overwhelmed and excited about this news initially. I thought about the fact that I would have to spend my beloved Hawkeye Football Saturday's hooked up to an IV receiving more Chemo. I thought about the weddings coming up in the next few months where I wouldn't be full strength and where I wouldn't be able to all of the wedding dancing that I love to do. I thought about how after each Chemo treatment you get a little be weaker physically and it seems to get harder to do the daily tasks that seemed so easy before such as house work, laundry, exercising and being able to do my job to the best of my abilities.
I thought all of these thoughts and then I realized that all of them had one thing in common, the word I. I couldn't do this or I couldn't do that. I was stuck on just me and how these extra treatments would effect my life. As I sit here in the Oncology ward it occurred to me that many of other patients and friends wouldn't be told that there treatments were working as good as mine and that they would be overjoyed if the doctor told them that they had a disease that was curable like mine. I realized how selfish I had been and quickly changed my views about the extra treatments that I would be receiving. Once you take the "I" or "me" out of the situation and think about others that aren't so lucky you see how little the "I" or "me" means in Life.
My degree is in teaching and one of the teaching sayings that would come up all of the time while I was at UNI was "Students will remember a fraction of a percent of the actual material that you teach them throughout there lives but they will remember 100% of the way that you made them feel." I think that this is true not just in teaching but in life. Making others feel good and special is the true meaning of life. In my moment of clarity I realized just how lucky I was that the treatments were working and that I had to work even harder to beat this not for me but for my friends, family and those less fortunate in the Cancer ward with tougher road to hoe.
In conclusion I am now fully ready to kick this 5th round of Chemo's butt and my Passion Bucket for life is overflowing!!!
"Life is 10% what happens to us and 90% how we react to it."
~Ed Thomas (the late great coach of the Parkersburg, Iowa Football Team)
I am humbled,
Brian
P.S. I cried when I wrote this sitting in my hospital bed at 5:25AM in the dark alone with my thoughts and it felt good to get it out.
Friday, July 16, 2010
Good News!
I went this morning and got a PET Scan done and the results came back today. We looked at my original PET Scan in April and the Dr compared it to the new PET Scan and the result are pretty impressive. I was diagnosed with Stage 4 Non-Hodgkin's Lymphoma and the first PET Scan showed it in many places such as my spleen, many other lymph nodes in my lower abdomen and a very very large mass in my armpit. Today the results came back and the cancer is only showing up in a small area in my armpit! This is great to hear because it means that the treatments are going very well. There is still a little bit of cancer left to knock out so I will have to do additional treatments but I am going to do whatever it takes to be rid of this disease forever.
Earlier in the week my amazing Mom got the all clear that her breast cancer is gone, yesterday my wonderful sister found a teaching job (Congrats Lindz!) and today I was told that my cancer is just in one area in my body now and that it has decreased in size tremendously. What a great week! God is Good! We have weathered a lot of storms over the past few weeks but light is beginning to show through the clouds.
I am going to another fantastic wedding this weekend for two great friends of mine Fidd and Aaron. We will be in Orange City, Iowa by tonight! As expressed in earlier posts Stacey and I love weddings and this one will be no exception. We are going to dance our butts off!
On Sunday I will be going in for my 5th Chemotherapy treatment. Stacey and I are excited that we have come this far and it has only been possible with all of the help from our Amazing family and friends. We are so blessed and we hope everyone has as great of a weekend as we are going to have!
Peace and Love,
Brian
Earlier in the week my amazing Mom got the all clear that her breast cancer is gone, yesterday my wonderful sister found a teaching job (Congrats Lindz!) and today I was told that my cancer is just in one area in my body now and that it has decreased in size tremendously. What a great week! God is Good! We have weathered a lot of storms over the past few weeks but light is beginning to show through the clouds.
I am going to another fantastic wedding this weekend for two great friends of mine Fidd and Aaron. We will be in Orange City, Iowa by tonight! As expressed in earlier posts Stacey and I love weddings and this one will be no exception. We are going to dance our butts off!
On Sunday I will be going in for my 5th Chemotherapy treatment. Stacey and I are excited that we have come this far and it has only been possible with all of the help from our Amazing family and friends. We are so blessed and we hope everyone has as great of a weekend as we are going to have!
Peace and Love,
Brian
Thursday, July 15, 2010
Karma is a B
Today is a fantastic day, I'm feeling great and I am excited for Aaron and Sarah's Wedding this weekend. Since I am in an exceptionally good mood I am going to share another funny story that has happened to me on my little Chemo journey. :)
My first round of Chemo in the hospital I had many visitors (which I really love and appreciate) but there was one imparticular that was a little odd. An older man who I didn't know would just wander into my room stand in the doorway with a smile on his face and say to everyone in the room, "How do they get all those people in there, Where are they coming from?" Then he would flip the lights on and off in my room like a strobe light. I would just look at him blankly until one of the nurses would come and get him and take him to the right room. This happened at least 4 times with the same man and each time he said the same thing and flipped the lights on and off. I was just as confused as he was I think and would tell this story in a humorous way and act out the actions of the old man and it was all in fun. :)
On my second round of Chemo I was doing my walks around the hospital with my Discman that I carry in my hand. (Yes they still make Discman Haha!) I finished my walk and headed into my room. I peaked in looked up and there was a very nice African American family sitting on the couches in the room and there daughter in the bed!!! I had gone in the wrong room! I did the only thing that I could do in that situation I flipped the lights on and off and said "How do they get all those people in there, Where are they coming from?" And I waited until a nurse escorted me back to my room. :)
So it just goes to show you that what goes around comes around and Karma is a B. I hope this brightened your day and made you laugh as much as it did me. And sorry to the family who I walked in on, my bad. :)
Smile,
Brian Pritchard
My first round of Chemo in the hospital I had many visitors (which I really love and appreciate) but there was one imparticular that was a little odd. An older man who I didn't know would just wander into my room stand in the doorway with a smile on his face and say to everyone in the room, "How do they get all those people in there, Where are they coming from?" Then he would flip the lights on and off in my room like a strobe light. I would just look at him blankly until one of the nurses would come and get him and take him to the right room. This happened at least 4 times with the same man and each time he said the same thing and flipped the lights on and off. I was just as confused as he was I think and would tell this story in a humorous way and act out the actions of the old man and it was all in fun. :)
On my second round of Chemo I was doing my walks around the hospital with my Discman that I carry in my hand. (Yes they still make Discman Haha!) I finished my walk and headed into my room. I peaked in looked up and there was a very nice African American family sitting on the couches in the room and there daughter in the bed!!! I had gone in the wrong room! I did the only thing that I could do in that situation I flipped the lights on and off and said "How do they get all those people in there, Where are they coming from?" And I waited until a nurse escorted me back to my room. :)
So it just goes to show you that what goes around comes around and Karma is a B. I hope this brightened your day and made you laugh as much as it did me. And sorry to the family who I walked in on, my bad. :)
Smile,
Brian Pritchard
Wednesday, July 14, 2010
Congratulations Mom
For those of you who don't know right after I was diagnosed with cancer my mother was also diagnosed with cancer. She told me about her breast cancer diagnosis as I sat in my hospital bed with my IV receiving Chemo. I hugged her tight looked her straight in the eyes and said that WE are going to beat cancer. She said yes We are. We wiped away our tears that day and neither of us has had one shred of doubt ever since. We will overcome.
And I have the pleasure of tell all of you that she has done just that. Yesterday she went in for her last radiation treatment and has gotten the all clear. She has beaten breast cancer. She stands as a humble inspiration to us all. Angela Faith Pritchard is an amazing person and she will let you know where her strength comes from and that is her middle name, Faith. I don't think that anyone has a more fitting middle name than my Mom. She always says "When you are down look up" (to God). Her Faith has never wavered and that is why she has been so strong. She exemplifies what it means to be a mother, friend, spouse and sister in Christ.
So here's to you Mom! You beat cancer and your reward is to keep on living and spread your wonderful Faith! You mean more to me than you will ever know and I am so proud to battle with you! You kicked cancers butt!
Love,
Brian
And I have the pleasure of tell all of you that she has done just that. Yesterday she went in for her last radiation treatment and has gotten the all clear. She has beaten breast cancer. She stands as a humble inspiration to us all. Angela Faith Pritchard is an amazing person and she will let you know where her strength comes from and that is her middle name, Faith. I don't think that anyone has a more fitting middle name than my Mom. She always says "When you are down look up" (to God). Her Faith has never wavered and that is why she has been so strong. She exemplifies what it means to be a mother, friend, spouse and sister in Christ.
So here's to you Mom! You beat cancer and your reward is to keep on living and spread your wonderful Faith! You mean more to me than you will ever know and I am so proud to battle with you! You kicked cancers butt!
Love,
Brian
Tuesday, July 13, 2010
The view of cancer from the passenger side
This is a fair warning, this post will be long (like most of my posts). Brian asked me last time he was in the hospital to write a post based on my perspective from day 1. I put it off till now partly because I was trying to collect my thoughts so it would be coherent and of course lack of time (remember all free time I have is enjoying life with Brian, even if it is making berry smoothies or cutting vegetables for veggie lasagna together). However, if there is one thing I have learned from all this don't put off today something to do for tomorrow because you never know.
Keeping my new found glory in mind lets go back to day 1, April 1, 2010 (the worst April Fool's Day ever). I can tell you more details about this day then I can about my wedding day. I was sitting in a lunch meeting listening to a potential faculty candidate present a lecture. My phone kept ringing (on silent) and I saw it was Brian. In my head I thought oh geez what does he want to do after work now...happy hour whatever. I couldn't answer my phone because I was in this meeting but I finally saw an email alert pop up on my outlook that was titled "CALL ME NOW...ASAP". Still not thinking it was anything important the lunch ended at that same time. I gathered my things headed to class while calling Brian at the same time.
When Brian answered he was quiet...finally he uttered the words ''The doctor called about my MRI." To recap Brian woke up new years day with a giant lump under his arm. Being the excellent PT student I am I started palpating, strength testing, rang of motion testing, etc. My initial thought was he tore a muscle. I told him to go to the doctor for weeks but he wouldn't listen because he didn't want to have surgery to fix his muscle (lesson one for PT student- don't assume anything if it doesn't make sense GO TO THE DOCTOR, trust your instinct!) So we saw our family doctor who decided to get an MRI.
Back to the story... Brian then followed with, "Stacey, they think it is cancer it was not muscular in orgin." At that one moment I literally felt like the world had ended. In one word my heart dropped to the floor, my school bag fell, all my muscles felt like noodles, and the only thing I could do is cry. I told my husband to come get me from school. The 15 minutes he took to come and get me felt like hours. In 15 minutes my mind went crazy. I thought why didn't I make him go in sooner this is my fault, why didn't I wake him up this morning and say I LOVE YOU before I left, why didn't I make his lunch, why, why, why. Within 30 minutes of the initial call from our doctor our Oncologist called and told us that we would be seen the next day over the noon hour. That to me was a relief, we didn't have to wait all weekend for news that was going to change our life.
We went home, sat on the couch ( I cried some more) Brian was strong and we talked about it. I know it wasn't my fault, I know I did as much as I could but it was just my initial thought. Not one point through this did Brian and I ask 'why us'. From the initial moments we knew that although we don't know why this happening there was and is a reason. We were never mad or angry just stunned.
The only thing Brian had to say to me was that he wants to be normal. He doesn't want people to think of him as the sick kid or the cancer kid or anything like that. He just wanted normal. After I had calmed down we decided to go grocery shopping, why who knows, we just wanted normalcy and groceries are normal. I will never forget grocery shopping. Brian is the ONLY person in the world who can be told he has cancer and then can go to store and make it a POINT to look every person he passed in the eye and say hello there, have a GREAT day! Who does that? Only Brian. I remember pushing the cart just laughing.
We came home, I cried some more, and by then we had told the first person, my older sister who is a doctor. She sent us some reading material on lymphoma (which is what they initially thought from the MRI). I read that article and had I thought on my mind. Everything for cancer survival is based on 5 years. Well for me five years was not enough, I need more then 5 years I need numbers for 70 year survival rates. Brian is my everything I'm not sure how I functioned without him before we were married. He truly is my compliment and brings it out the goodness in me. Five years was not enough time for me I needed more.
I tried to distract myself and studied (I had a test the next day) that was the most efficient studying I had ever done. As I studied Brian sat next to me. I made him watch old episodes of Modern Family online to make him laugh as well as allow me to study. For about three weeks there after Brian and I were attached at the hip. If you came over and saw me in the kitchen Brian was right there.
As you can imagine we didn't sleep much that night, actually none at all. We mainly just laid there wondering what the next day would bring. Brian didn't go to work on Friday April 2 however I went to school to take a test then went home.
Friday we went to our appointment at the cancer center, and I remember thinking 'I' didn't think we would be at this place, at least not for decades''. We met our oncologist, whom we love. He was honest with us from the beginning and didn't sugar coat anything. He told us what the next few weeks would be like. It appeared to be lymphatic however it was not 100% so he was able to get us in for a biopsy the following Monday and Tuesday. The biopsy would confirm what type of cancer Brian had and would determine the treatment plan.
We left Friday with a positive outlook. Lymphoma is one of the most curable cancer's and that was a relief for two people in their twenties, who are newly weds, living on one income, and the other in medical school. We weren't mad at what was happening, in fact we began to embrace it and make sense of what was going on. In 24 hours we became closer as husband and wife. Our marriage became stronger and we learned that you can never put off something for today to do tomorrow. I will never again forget to say I love you or forget to take one second out of my day to give Brian a hug or kiss.
The rest of the weekend was spent enjoying each other's company and enjoying the life we had been given. We had so much fun that weekend and I can honestly say we did nothing. We laid around the house, talked, and watched a movie with popcorn. You learn to reconnect and learn you don't have to go to a fancy meal, to a movie, to a play, on vacation in order to do that. All you need is each other and no other distractions, just the realization of how amazing life is and how amazing it is that one person can make your life worth living.
I will end for tonight and continue our story tomorrow. I promise to not have it be so long in the future but the first 48 hours were note worthy.
Brian and I are using this blog as a way to write down our experience to share with our kids someday and perhaps even write a book. Thanks for being apart of our journey.
Keeping my new found glory in mind lets go back to day 1, April 1, 2010 (the worst April Fool's Day ever). I can tell you more details about this day then I can about my wedding day. I was sitting in a lunch meeting listening to a potential faculty candidate present a lecture. My phone kept ringing (on silent) and I saw it was Brian. In my head I thought oh geez what does he want to do after work now...happy hour whatever. I couldn't answer my phone because I was in this meeting but I finally saw an email alert pop up on my outlook that was titled "CALL ME NOW...ASAP". Still not thinking it was anything important the lunch ended at that same time. I gathered my things headed to class while calling Brian at the same time.
When Brian answered he was quiet...finally he uttered the words ''The doctor called about my MRI." To recap Brian woke up new years day with a giant lump under his arm. Being the excellent PT student I am I started palpating, strength testing, rang of motion testing, etc. My initial thought was he tore a muscle. I told him to go to the doctor for weeks but he wouldn't listen because he didn't want to have surgery to fix his muscle (lesson one for PT student- don't assume anything if it doesn't make sense GO TO THE DOCTOR, trust your instinct!) So we saw our family doctor who decided to get an MRI.
Back to the story... Brian then followed with, "Stacey, they think it is cancer it was not muscular in orgin." At that one moment I literally felt like the world had ended. In one word my heart dropped to the floor, my school bag fell, all my muscles felt like noodles, and the only thing I could do is cry. I told my husband to come get me from school. The 15 minutes he took to come and get me felt like hours. In 15 minutes my mind went crazy. I thought why didn't I make him go in sooner this is my fault, why didn't I wake him up this morning and say I LOVE YOU before I left, why didn't I make his lunch, why, why, why. Within 30 minutes of the initial call from our doctor our Oncologist called and told us that we would be seen the next day over the noon hour. That to me was a relief, we didn't have to wait all weekend for news that was going to change our life.
We went home, sat on the couch ( I cried some more) Brian was strong and we talked about it. I know it wasn't my fault, I know I did as much as I could but it was just my initial thought. Not one point through this did Brian and I ask 'why us'. From the initial moments we knew that although we don't know why this happening there was and is a reason. We were never mad or angry just stunned.
The only thing Brian had to say to me was that he wants to be normal. He doesn't want people to think of him as the sick kid or the cancer kid or anything like that. He just wanted normal. After I had calmed down we decided to go grocery shopping, why who knows, we just wanted normalcy and groceries are normal. I will never forget grocery shopping. Brian is the ONLY person in the world who can be told he has cancer and then can go to store and make it a POINT to look every person he passed in the eye and say hello there, have a GREAT day! Who does that? Only Brian. I remember pushing the cart just laughing.
We came home, I cried some more, and by then we had told the first person, my older sister who is a doctor. She sent us some reading material on lymphoma (which is what they initially thought from the MRI). I read that article and had I thought on my mind. Everything for cancer survival is based on 5 years. Well for me five years was not enough, I need more then 5 years I need numbers for 70 year survival rates. Brian is my everything I'm not sure how I functioned without him before we were married. He truly is my compliment and brings it out the goodness in me. Five years was not enough time for me I needed more.
I tried to distract myself and studied (I had a test the next day) that was the most efficient studying I had ever done. As I studied Brian sat next to me. I made him watch old episodes of Modern Family online to make him laugh as well as allow me to study. For about three weeks there after Brian and I were attached at the hip. If you came over and saw me in the kitchen Brian was right there.
As you can imagine we didn't sleep much that night, actually none at all. We mainly just laid there wondering what the next day would bring. Brian didn't go to work on Friday April 2 however I went to school to take a test then went home.
Friday we went to our appointment at the cancer center, and I remember thinking 'I' didn't think we would be at this place, at least not for decades''. We met our oncologist, whom we love. He was honest with us from the beginning and didn't sugar coat anything. He told us what the next few weeks would be like. It appeared to be lymphatic however it was not 100% so he was able to get us in for a biopsy the following Monday and Tuesday. The biopsy would confirm what type of cancer Brian had and would determine the treatment plan.
We left Friday with a positive outlook. Lymphoma is one of the most curable cancer's and that was a relief for two people in their twenties, who are newly weds, living on one income, and the other in medical school. We weren't mad at what was happening, in fact we began to embrace it and make sense of what was going on. In 24 hours we became closer as husband and wife. Our marriage became stronger and we learned that you can never put off something for today to do tomorrow. I will never again forget to say I love you or forget to take one second out of my day to give Brian a hug or kiss.
The rest of the weekend was spent enjoying each other's company and enjoying the life we had been given. We had so much fun that weekend and I can honestly say we did nothing. We laid around the house, talked, and watched a movie with popcorn. You learn to reconnect and learn you don't have to go to a fancy meal, to a movie, to a play, on vacation in order to do that. All you need is each other and no other distractions, just the realization of how amazing life is and how amazing it is that one person can make your life worth living.
I will end for tonight and continue our story tomorrow. I promise to not have it be so long in the future but the first 48 hours were note worthy.
Brian and I are using this blog as a way to write down our experience to share with our kids someday and perhaps even write a book. Thanks for being apart of our journey.
Saturday, July 10, 2010
Attitude is a Choice
For the past week I have been feeling pretty sluggish, tired and weak from the Chemo. I have gone to bed really early most nights and the Neuprogen shots hurt my bones. It's not a pleasant experience but you tough it out and go to work. I managed to work a full work week yet again and am proud of that. My blood counts were getting low on Tuesday but by Friday that had sprung back up again and I was elated about that. With cancer its all about SPV's or Small Personal Victories. You tell yourself that if I can get through this round that's one more down or If I can make it through this work day that's not half bad. SPV's are like setting really little goals for yourself to achieve and when your going through your treatments its important to not get ahead of yourself. Just keep plugging away, get into a rhythm and keep the Faith.
The good news is that I am feeling much better now. Stacey is done giving me my Neuprogen shots and life is good! This week has made me think back to when I was going through my first round of Chemo and the mantra that I kept telling myself as I walked the halls, "This is not a death sentence it is a Life sentence." What it means is that this is my wake up call to start living life to the fullest again. Get together with friends, family and really soak up the beautiful world that God has made for us. I made a pact with myself early on in little journey that regardless of the result at the end of my treatments that during them I was going to live life to the fullest!
Whatever you are doing this weekend do it out of love. Brighten some one's day or just do something that you love to do. Make today your own little celebration of life! Your alive, your healthy, you have faith, friends and family and really that's all you need! I am going to enjoy the fact that I for the first time out of the last week don't feel crappy! :) I am very blessed and very thankful for everything that I have!
Attitude is a choice,
Brian Pritchard
The good news is that I am feeling much better now. Stacey is done giving me my Neuprogen shots and life is good! This week has made me think back to when I was going through my first round of Chemo and the mantra that I kept telling myself as I walked the halls, "This is not a death sentence it is a Life sentence." What it means is that this is my wake up call to start living life to the fullest again. Get together with friends, family and really soak up the beautiful world that God has made for us. I made a pact with myself early on in little journey that regardless of the result at the end of my treatments that during them I was going to live life to the fullest!
Whatever you are doing this weekend do it out of love. Brighten some one's day or just do something that you love to do. Make today your own little celebration of life! Your alive, your healthy, you have faith, friends and family and really that's all you need! I am going to enjoy the fact that I for the first time out of the last week don't feel crappy! :) I am very blessed and very thankful for everything that I have!
Attitude is a choice,
Brian Pritchard
Wednesday, July 7, 2010
What a CRAZY weekend!
Usually when Monday strikes Brian and I say the weekend went by too fast...this is not the case this past weekend. I had a four day weekend from work and I feel like I had been off for 7 days. If you are all feeling abandoned it is because we have been running around like mad men and enjoying the beautiful weather.
Brian busted out late thursday night and we then kicked off the weekend by surprising our DEAR friend Andrew at the airport. He had a four day pass from Officer training in KY and was able to come home to see family, friends, and his dear Fiance Mandy. It was so nice to surprise Andrew at the airport (although I'm sure not the best place for a patient recently discharged from the hospital to go) because although he is away from the love of his life and going through intense military training he manages to find time to call Brian on a regular basis. Brian loves talking to Andrew, when the two of them are together you will pee your pants laughing so hard. We caught up with Andrew and Mandy at the Machiene Shed for breakfast (Brian has been wanting to try it and he literally ran to the table, I have witnesses!)
After chasing down Brian's medicine Friday I laid down for a quick nap....only to be woken up by a cracked wall and falling curtain rod that hit my head. Our poor gutters apparently couldn't keep up with the rain or where plugged so we had rain damage. Only in times like these do I like being in an apartment where I do not have to pay the repair bill. OH WELL!!!
After that rude awakening we went and watched our Godson play baseball. Erik had a baseball tourney in Des Moines which was awesome becuase we rarely get to see him and his brother Luke let alone watch him play sports. We have named him KING of the RBI's. For only being 11 years old he is very talented and Brian said he is a smart baseball player. We had so much fun watching him (all the balls I took to the gut while babysitting him has paid off). Brian enjoyed getting out of the house (although once again probably not the best idea, but what is GERM X for anyways?) and sitting in fresh air instead of stuck at home recovering.
Saturday we went to another baseball game and then took Luke, are other Godson, to see Toy Story 3. Once again probably not what the doctor wanted, but Brian enjoyed the movie (and I caved in and let him get movie popcorn- I wish they could top it with berries). His favorite character is Mr. Potato head. We also emergently took his car in and ended up with new brakes and everything else that accompanies new brakes. Just another lemon to add to this delicious lemonade we call LIFE.
Sunday...we crashed...slept for 12 hours (I may have slept longer but that wont be disclosed.) Once we were up and going we drove back to Cedar Rapids for my parents annual July 4th BBQ. Luckily, we were able to enjoy my mom's smoked ribs and pork and one round of backyard volleyball before relocating the party inside. What a great day!
As if we hadn't done enough, we managed to get a round of 9 in Monday morning. Brian loves golfing and unfortunately this was his second time golfing this summer. It is hard for Brian because he used to play 18 and walk all the time, now 9 holes with a cart is so taxing for him. I could tell he was tired and out of energy becuase the last two holes we used my shots for best ball (finally I'm better then him)!!
I surely thought that such a long, crazy, fun filled weekend would take it out of him but fortunely he has felt AWESOME. He said it was the best week after chemo yet. He is still tired and weak but he was a trooper and put a smile on his face and enjoyed the weekend that God gave him. Also, he escaped another blood transfusion, I swear it is all the red meat I pump him up with the week after.
We hope you all had just as nice of a weekend that we had.
Thank you to all of those that serve our country!
Brian busted out late thursday night and we then kicked off the weekend by surprising our DEAR friend Andrew at the airport. He had a four day pass from Officer training in KY and was able to come home to see family, friends, and his dear Fiance Mandy. It was so nice to surprise Andrew at the airport (although I'm sure not the best place for a patient recently discharged from the hospital to go) because although he is away from the love of his life and going through intense military training he manages to find time to call Brian on a regular basis. Brian loves talking to Andrew, when the two of them are together you will pee your pants laughing so hard. We caught up with Andrew and Mandy at the Machiene Shed for breakfast (Brian has been wanting to try it and he literally ran to the table, I have witnesses!)
After chasing down Brian's medicine Friday I laid down for a quick nap....only to be woken up by a cracked wall and falling curtain rod that hit my head. Our poor gutters apparently couldn't keep up with the rain or where plugged so we had rain damage. Only in times like these do I like being in an apartment where I do not have to pay the repair bill. OH WELL!!!
After that rude awakening we went and watched our Godson play baseball. Erik had a baseball tourney in Des Moines which was awesome becuase we rarely get to see him and his brother Luke let alone watch him play sports. We have named him KING of the RBI's. For only being 11 years old he is very talented and Brian said he is a smart baseball player. We had so much fun watching him (all the balls I took to the gut while babysitting him has paid off). Brian enjoyed getting out of the house (although once again probably not the best idea, but what is GERM X for anyways?) and sitting in fresh air instead of stuck at home recovering.
Saturday we went to another baseball game and then took Luke, are other Godson, to see Toy Story 3. Once again probably not what the doctor wanted, but Brian enjoyed the movie (and I caved in and let him get movie popcorn- I wish they could top it with berries). His favorite character is Mr. Potato head. We also emergently took his car in and ended up with new brakes and everything else that accompanies new brakes. Just another lemon to add to this delicious lemonade we call LIFE.
Sunday...we crashed...slept for 12 hours (I may have slept longer but that wont be disclosed.) Once we were up and going we drove back to Cedar Rapids for my parents annual July 4th BBQ. Luckily, we were able to enjoy my mom's smoked ribs and pork and one round of backyard volleyball before relocating the party inside. What a great day!
As if we hadn't done enough, we managed to get a round of 9 in Monday morning. Brian loves golfing and unfortunately this was his second time golfing this summer. It is hard for Brian because he used to play 18 and walk all the time, now 9 holes with a cart is so taxing for him. I could tell he was tired and out of energy becuase the last two holes we used my shots for best ball (finally I'm better then him)!!
I surely thought that such a long, crazy, fun filled weekend would take it out of him but fortunely he has felt AWESOME. He said it was the best week after chemo yet. He is still tired and weak but he was a trooper and put a smile on his face and enjoyed the weekend that God gave him. Also, he escaped another blood transfusion, I swear it is all the red meat I pump him up with the week after.
We hope you all had just as nice of a weekend that we had.
Thank you to all of those that serve our country!
Sunday, July 4, 2010
My Funny Real Life George Castanza Moment
George Costanza is one of the main characters from the show Seinfeld and we share a very similar story. In one episode George is told by a doctor that his test results came back negative for cancer. For those in the the know (AKA not me) negative results actually is a good thing and it confirms that the you do not have whatever it was the doctors were looking for.
Travel back in time with me for a bit. It is mid April and Stacey and I have come to terms with the fact that I have Lymphoma and we just want to get our treatment plan and get started. But before we do that they need to stage the cancer and let me know if it is in other places in my body such as my bone marrow. All of the news that we had been receiving about my diagnosis just seemed to get worse and I was ready for any good news. I had just had a bone marrow biopsy done and the results were in. ;)
Scene - Small doctors office where Stacey and Brian sit tensely to hear the results of the bone marrow biopsy and learn the Staging of the cancer. Door opens and doctor comes in. Greetings are exchanged and then we get down to the nitty gritty...
Doctor: So the results came back in and the results came back positive.
Stacey: (Tenses in her chair and eyes take on a sense of shock)
Brian: (Rolls back in his chair with a complete sense of relief and a huge smile on his face)
Brian: Thank God Doc because we haven't heard any good news in so long
Doctor: (Slight look of confusion to the strange patients reaction)
Doctor: O....K....... Well it seems to be in the bone marrow and we are at least looking at Stage 3.
Brian: (Confused but still waiting for the "positive" results that he promised)
Stacey: (Tearing up)
Doctor: We will set up another appointment soon. Thanks. (Leaves room)
Brian: (Turns to Stacey) Wooooooow! That guy better be coming back because all of that news was terrible!
Stacey: What???
Stacey later explained to me the confusing terminology that only people in medicine use. Positive is Bad and Negative is Good. I told Stacey after she explained all this that the Doctors need a new system for dummies like me. As soon as they walk into the hold up a big smiley face or a big frowny face! :)
I hope that this little story put a big smile on every ones face and it was just what the Doctor ordered! Have a very very positive weekend everyone or if your in the medical field have an extremely negative one! :)
Happy 4th of July! Go USA!
Brian Pritchard
Travel back in time with me for a bit. It is mid April and Stacey and I have come to terms with the fact that I have Lymphoma and we just want to get our treatment plan and get started. But before we do that they need to stage the cancer and let me know if it is in other places in my body such as my bone marrow. All of the news that we had been receiving about my diagnosis just seemed to get worse and I was ready for any good news. I had just had a bone marrow biopsy done and the results were in. ;)
Scene - Small doctors office where Stacey and Brian sit tensely to hear the results of the bone marrow biopsy and learn the Staging of the cancer. Door opens and doctor comes in. Greetings are exchanged and then we get down to the nitty gritty...
Doctor: So the results came back in and the results came back positive.
Stacey: (Tenses in her chair and eyes take on a sense of shock)
Brian: (Rolls back in his chair with a complete sense of relief and a huge smile on his face)
Brian: Thank God Doc because we haven't heard any good news in so long
Doctor: (Slight look of confusion to the strange patients reaction)
Doctor: O....K....... Well it seems to be in the bone marrow and we are at least looking at Stage 3.
Brian: (Confused but still waiting for the "positive" results that he promised)
Stacey: (Tearing up)
Doctor: We will set up another appointment soon. Thanks. (Leaves room)
Brian: (Turns to Stacey) Wooooooow! That guy better be coming back because all of that news was terrible!
Stacey: What???
Stacey later explained to me the confusing terminology that only people in medicine use. Positive is Bad and Negative is Good. I told Stacey after she explained all this that the Doctors need a new system for dummies like me. As soon as they walk into the hold up a big smiley face or a big frowny face! :)
I hope that this little story put a big smile on every ones face and it was just what the Doctor ordered! Have a very very positive weekend everyone or if your in the medical field have an extremely negative one! :)
Happy 4th of July! Go USA!
Brian Pritchard
Thursday, July 1, 2010
Guess Who Gets To Go Home Today?
Yep thats right. I do! I do! Late tonight my 4th round of treatments will be done and I can go home and start to work a nice new butt groove back in my favorite couch at home! I can't believe that I am 2/3rds of the way done with my treatments. God is Good! I am so blessed to have such great people surrounding me to help me along the way. All of the nurses, doctors, friends, family and supporters have been amazing!
But there is one person that has watched over me the entire time and deserves Big Big Thanks. That is my beautiful, smart, caring and loving wife Stacey. When she's not at work or school she's here at the hospital helping me in any way that she can. I am so lucky to have my best friend and spouse along with me on this journey. She makes sure that I eat right, get exercise, stay positive, stays with me and basically goes above and beyond the call of duty. Stacey epitomizes the vows that we took on our wedding day of "In sickness and in health". What can I say she's my Superwoman and there are no amount of thank yous that I can ever give her that would do justice for all of the things that she has done for me. Thank you Stacey, thank you.
On a lighter note she does let me know that when she is pregnant someday that I got it coming. :) I think I will be at McDonald's getting a lot of hot fudge sunday's for her.
Thanks Honey!
Brian Pritchard
But there is one person that has watched over me the entire time and deserves Big Big Thanks. That is my beautiful, smart, caring and loving wife Stacey. When she's not at work or school she's here at the hospital helping me in any way that she can. I am so lucky to have my best friend and spouse along with me on this journey. She makes sure that I eat right, get exercise, stay positive, stays with me and basically goes above and beyond the call of duty. Stacey epitomizes the vows that we took on our wedding day of "In sickness and in health". What can I say she's my Superwoman and there are no amount of thank yous that I can ever give her that would do justice for all of the things that she has done for me. Thank you Stacey, thank you.
On a lighter note she does let me know that when she is pregnant someday that I got it coming. :) I think I will be at McDonald's getting a lot of hot fudge sunday's for her.
Thanks Honey!
Brian Pritchard
Side Effects and Their Soundtrack
One of the things that I get asked about a lot are side effects of my treatments. I decided to take this great question and set it to music.
Toxic - Brittany Spears - I know, I know this song s pretty bad and I'm not a Brittany fan but it is kind of catchy and it does explain one of my side effects. I'm on a 21 day cycle and receive treatments for about 5-7 days at a time and I am "Toxic" for about a week after my treatments are done. It's nothing to worry about but I do have to use a separate bathroom in our little apartment while the Chemo runs its course. (Random fact about this song: My wife likes to clean to it)
Comfortably Numb - Pink Floyd - Alright this is a much better song by an awesome band. The numbness that I feel comes from the loss of cells in my fingertips. It doesn't really effect me a whole lot but from the tip of my fingers to the first knuckle I cant really feel much. If you have received any hand written cards from me or seen my handwriting lately it's worse than it was. Not a really terrible side effect just a little annoying.
Blister in the Sun - Violent Femmes - Great song and it explains the blisters on my feet. I constantly have blisters on my feet due to the lack of cell growth in my feet. They don't look pretty but at least they dont hurt at all. It really did blister in the sun this weekend when we were in Okoboji. I wore my flippy floppy's and the blisters got a bit worse. Not doing that again while I'm on the Mo'.
Sick and Tired - Nappy Roots - Great, Great song that we used to listen to in college a lot. This is how you feel when you are under the influence of the Mo'. A little bit woozy and a little bit tired. These symptoms start on about the 3 to 4th day of my treatments and end on about the 10th or 11th day. Once you get past this phase of the Mo' then you know that things are lookin up and you really need to get out and enjoy it!!!
"Every things gonna be alright, Every things gonna be alright now" ~ Bob Marley
Brian Pritchard
Toxic - Brittany Spears - I know, I know this song s pretty bad and I'm not a Brittany fan but it is kind of catchy and it does explain one of my side effects. I'm on a 21 day cycle and receive treatments for about 5-7 days at a time and I am "Toxic" for about a week after my treatments are done. It's nothing to worry about but I do have to use a separate bathroom in our little apartment while the Chemo runs its course. (Random fact about this song: My wife likes to clean to it)
Comfortably Numb - Pink Floyd - Alright this is a much better song by an awesome band. The numbness that I feel comes from the loss of cells in my fingertips. It doesn't really effect me a whole lot but from the tip of my fingers to the first knuckle I cant really feel much. If you have received any hand written cards from me or seen my handwriting lately it's worse than it was. Not a really terrible side effect just a little annoying.
Blister in the Sun - Violent Femmes - Great song and it explains the blisters on my feet. I constantly have blisters on my feet due to the lack of cell growth in my feet. They don't look pretty but at least they dont hurt at all. It really did blister in the sun this weekend when we were in Okoboji. I wore my flippy floppy's and the blisters got a bit worse. Not doing that again while I'm on the Mo'.
Sick and Tired - Nappy Roots - Great, Great song that we used to listen to in college a lot. This is how you feel when you are under the influence of the Mo'. A little bit woozy and a little bit tired. These symptoms start on about the 3 to 4th day of my treatments and end on about the 10th or 11th day. Once you get past this phase of the Mo' then you know that things are lookin up and you really need to get out and enjoy it!!!
"Every things gonna be alright, Every things gonna be alright now" ~ Bob Marley
Brian Pritchard
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