I know its been quite a while since my last post. I’m sorry to those of you that thought this would be one of those blogs updated every few days so you could follow along in each step of these last few grueling months. I know I should write more, but recently when I have sat down to write I really can’t think of where to begin or what I actually want to say. Crazy, huh? A cancer writer’s block. I think im good now, I am ready to write a little bit. So here we go, this one should be interesting.
I turn 27 tomorrow and all I can think of right now is wow what a life ive had so far. I have gotten the opportunity to travel and live on 3 different continents. I was able to study abroad in Ecuador and visit the Galapagos Islands. I have lived and worked in Malawi at a teacher’s training college in the middle of nowhere. I started my own clothes collection operation in a new city/ state I had never been to before (even though the finances were cut after 5 months, but that’s a different story for another time). I have had two great jobs out of college. I graduated college, cheered on K-State to our first Big 12 football Championship, experienced Michael Beasley, and survived the Delt house. I have gotten to meet thousands of unique and different people. Some people I can live without, but more than enough people I can’t. I have had amazing mentors and met people that are going to change the world and some that already are. I’ve seen my family grow up, expand, and add new additions (one of these new additions is coming in Feb 2012 from my sister Katie, I think she should name it Paula or Paulette; ha ha). I voted for our first black president and believed he could really help change things. I’ve seen the birth and expansion of face book and a movie about the birth of face book, but I have also have been diagnosed with Cancer. When I look back on everything I have been a part of and what I have accomplished I am actually pretty amazed, but when other people look at me now all they see is the guy with cancer. Maybe it’s because that’s what is going on right now, right in front of them, but there is so much more to me than just having cancer.
My 5th round of Chemo went pretty well. I was a lot more tired throughout the actual chemo and the couple weeks after than I ever have before. Getting up and going out took some real effort, but besides being sore and tired I got through the first 2 recovery weeks and thought I was going to make it through the entire round without getting sick again. Man was I wrong. On Tuesday night I started to feel a little weakness in my right leg and noticed a sizeable bump growing on my left calf. Wednesday was a pretty normal day, but I still could feel that weakness slowing me down a little bit. I fell asleep on my futon watching tv on Wednesday night, I woke up around midnight and it was very difficult to move to my bed which is maybe 4 ft away. I woke up on Thursday and it took every ounce of strength I had to get up and go pee. I was supposed to go to the dr’s office for some blood work, but I called my mom and let her know that was not going to happen. I was so weak that after going to the bathroom in the morning I made it back to the corner of my bed and while curled up In a little ball I could not pull myself up to the top of the bed to lay down normal. I laid at the corner of the bed for an hour or so until I was convinced I could pull myself to the top of the bed. Every inch I moved felt like I was pulling myself through broken glass. Every muscle in my body was in constant pain. I got ahold of a worried mother and let her know I needed to go to the hospital. I let her know I was not going to be able to walk and she would need to get a wheel chair so I could get out of my apartment. A little while later she and my dad showed up at my apartment and any strength I had left was completely gone. Going from my bed to the ER at st. lukes was a journey in itself. Every time I had to move I had to have someone, mostly my dad pick up my limp body and move me. After I got to the hospital, it took me almost a day to regain enough strength to start moving my arms. It took me about 3 days to be able to move my legs, and this was in the bed. After I got strength back in my arms and core, every time I moved my body I was in the same pain as the first day. Every time I needed to pee I had to get a shot of morphine so the nurses could roll my body on my side and I could pee in the bedside urinal. After my blood cultures came back it was determined that I had been infected with MERSA. The infection started in my port and little clots of blood broke off and ended up in my lungs, if that wasn’t bad enough, I had had a bad reaction to my last dose of Vincristine one of my chemo drugs. That reaction is where all my muscle malfunctions came from. When I read up on all the drugs and under side effects it said muscle weakness, I never imagined this is what that meant. During my hospital stay I had more pain killers than anyone should have in their life. I also had 6 blood transfusion, 7 platelet transfusions, had my infected port removed (which I was awake for and was not very happy about), and had a new picc line installed in my right arm. Because of the MERSA I receive daily IV antibiotics for a total of 6 weeks. There was one day in my hospitalization that stands out to me. I was moving without pain in my bed and in my mind I was ready to get up and use the portable toilet. Annie one of the NAs got out a walking belt and we tried to get up. In my mind I was ready and strong enough to get up, but nothing. My feet were on the floor and I still couldn’t feel my legs. I tried to push up, but nothing happened. 3 days before I couldn’t feel my legs or arms at all, but now my mind was ready to stand up and my body said no, I had no power and it crushed me. I cried more that day than I have since this all began. I was ready to give up, Annie comforted me like she always does, because I almost instantly started breaking down after I couldn’t stand. She did what she could, but I was ready to shut myself off. A few hours later another nursing assistant walked into my room named Tina. She said she wanted to meet me. Tina is a breast cancer survivor and we had a great heart to heart. I don’t think I have ever cried the first time I met someone until now. Talking to Tina kept me positive that day and gave me the strength to get up a few days later and push myself through physical therapy. Getting up and walking with a walker was definitely a new experience for me, but taking those first few steps felt like I had never done it before. I made it halfway down the hallway the first day and my body instantly ached, but by the second day I was twice as strong and muscle memory came back. By the 4th day I could walk around the entire floor twice. It all came back so fast. Which is good because I don’t think I could’ve spent one more day in the hospital, 12 was enough for me.
Since getting out I have felt good. I have had another bone marrow biopsy and cultures drawn. Everything was clear and looked good in that. I really hope not to have another one of those ever again. I am over having long needles stuck into my hip and spine. Nine times total is enough for a lifetime, trust me. I have also been getting my daily iv antibiotics for about 4 weeks now. I am getting them from the outpatient infusion center at st. lukes. I am glad I have been doing it there because I have gotten to know the nurses and techs in there a lot better and I am very glad I have gotten the chance to do that. They are great people and amazing at what they do. Plus Cassandra really needed to make up for giving me that hot dose of Vincristine (just kidding). I am still waiting on my blood counts to go back up to a healthy level so I can start my next and last round of chemo. I am almost a month behind where I should be now and I am chomping at the bit to get all of this over with so I can get back to my life. I am really excited to get back to “normal” life, not only because I can act like a normal person again, but I have all these new friends (nurses) that I can go out with and live my life knowing. You can never know enough great people and I just added so many great people to that list. Today is my birthday. I went into get my antibiotics and the nurses surprised me with a birthday cake and a card from all of them. It was a big surprise, I had no idea it was coming. I have never been a huge fan of the fact that its my birthday. I guess I am like my grandmother Betty in that sense. She never liked her birthday, but she loved making everybody else’s birthdays a big deal. I like to have a big party on my birthday, but not for me. I like having Halloween party’s so all my friends can enjoy themselves. I could care less about my birthday, but if there is going to be a celebration I want to make sure everyone else is having fun. But if people want to get me presents, then I will graciously accept them . I will keep both birthday cards I got from all the new and old friends I have for a long time.
I hope to start my last round of chemo ASAP. Still waiting on my platelets to go up 10 140,000 before I can start. My other blood levels have finally gone up, but my platelets have decided to hang out around 50,000 for the last 6 weeks. As I have said to a few people in the last few weeks, I want to get the last treatment done, because I am definitely OVER having cancer. I have been in remission for a few months and I really want to start my life after Burkitts. In my mind I am ready to get back to work and get back involved with all of the exciting things that are going on with the Zoo right now. I also want to go to the K-State bowl game where ever that might be. But I am really ready to start getting back in shape and having fun again, whatever that means.
Sunday, November 6, 2011
Wednesday, September 7, 2011
Remission and other fun things
So the tests are in and they say im in remission. Its hard to describe the overwhelming feelings that come with hearing the words, “well your tests were clear and it looks like your cancer is in remission”. It was kind of a bitter sweet time when I got the news from my uncle. I had to check back into the hospital the very next day because of extreme pain and a “non-existent” white blood cell count. This trip to the hospital was the longest and hardest one so far. After I get this great news I have more pain in the following days then I’ve had in the first 3 ½ rounds. Also they deemed me a fall risk which totally sucked. I had to have a nurse or aid help me get in and out of bed and basically do everything for me, which I did not like one bit. I know I can’t do everything on my own and the first half of my stay I actually needed the extra attention, but I do love my independence and I hate when I get doted on constantly, so it was a pretty terrible experience for me. The first day my aid Annie insisted on helping me change and putting my hospital socks on for me, I was moving pretty slow and it might have taken me a little while to do it myself, but I still wanted to do all that myself. Annie is one of my favorites at the hospital and I trust her more than you can imagine, but the whole situation made me realize how bad of shape I was actually in. I also was introduced to this little thing called Lacti-lose, which has a pretty funny story that goes along with it, but you can add Lacti-lose to my list of things I completely despise. I would share the story on here, but I doubt most of you really want me to get into the details on here, especially if you know what Lacti-lose is. It makes me shutter even thinking about it. I finally met with some specialists who gave me some extra creams that seemed to work great, hopefully they continue to relieve my interesting pains in the last 2 rounds.
Speaking of the last two rounds, I am pretty much expecting to be spending the last two months in the hospital. My blood counts dropped so fast after round four, I can only expect them to do the same after the last two rounds. It sounds a little pessimistic which I am not trying to be, but I am not exactly excited for these last two rounds. The previous two rounds have been all sorts of hell for me and I think realistically the last two will be the same or worse. I’d like to think that these last two rounds will be a piece of cake, but again realistically my aches and pains haven’t had enough time to heal completely in between rounds, so when I get hit with the next round of chemo the pain just seems to get worse. One kind of annoying thing that has gone on in between the latest round and now is my eye brows and eye lashes are finally falling out. Being bald hasn’t been bad at all, some people (girls) have even said I look good bald, but I have been dreading losing my eye hair. Its annoying because I keep having to fish eye lash after eye lash out of my eyes. Of course they don’t just fall out down my cheek, but they get stuck in my eyes which has been a real pain in the ass.
One fun thing that happened during my last hospital stay, was my mom brought me some chips, salsa, and guacamole and I had a little hospital party in my room. I got some of the nurses to stop in and have an afternoon snack and hang out with me for a little bit. We had some good convo and some laughs which was really nice for me. It made me feel like I wasn’t a sickly patient for a while. As I have made it known the people that take care of me are very special people. The nurses and aids have made this whole process so much easier for me. I was talking to two of them at the end of one of their shifts and they said they have gotten to know a couple of patients really well over the years, patients that have had lymphomas and other intense cancers, but those patients don’t come back and see them as much as they’d like. I was pretty up front with sarah and liz when I said that would not be the case with me. I plan on stopping by and bringing them goodies on a pretty regular basis. I honestly can’t imagine some of these women not being in my life for a long time to come. Whether its meeting them out for a few drinks or just stopping by the 5th floor on my way home and saying hi, these are amazing people that I feel could only benefit my life after cancer. It makes me sad each and every patient that passes through the fifth floor doesn’t get the chance to get to know each and every nurse like I have.
I start my fifth round today. It is my last odd cycle. I am not a big fan of the odd cycles. The drugs really start to get to me after about day four and its really hard to keep a smile on my face. I have gotten a lot of emails and facebook messages from people telling me how strong I am, but this cycle doesn’t make me feel strong. The whole process doesn’t make me feel strong. When I get done with a cycle in the hospital, I go home and I’m exhausted and feel torn down for about 2 weeks. It is a lot of work for me to get up and make myself food and really do anything. I can’t take myself anywhere, I need a parental chauffer to go to dr’s appointment and go grocery shopping, don’t get me wrong I can take care of myself, but it gets really hard to agree with people telling me I have great strength. I know there are all kinds of strength and I get where people are coming from, but it just gets really hard to agree with their assessments a lot of the time. I would say the people that are strong are my nurses, who come to work every day and help people who are fighting the fight of their life without so much as a thank you sometimes. When they have to leave their new born baby, or sick child to come work a 12 hour shift and help a 26 year old lymphoma patient or the new patient that just came out of surgery and can’t get themselves out of bed. To me that is strength. Or a mother who brings her son lunch and dinner almost every day in the hospital so he doesn’t have to make himself sick by eating the slop served by the hospital each day. Also, a father who comes three times a day and sits by his only son’s bed just to make sure everything is ok. Even in the early morning when said son is asleep, but he still is there drinking his coffee and doing sudokus or reading what looks like a terribly boring book about a French WWII general and Prime minister. Or the cousin who will never let you run out of cheez-its, or an uncle who pops in every day on his lunch break to check in, even if that uncle is also your doctor, or an aunt that sends reassuring and funny emails when you need some support, or other family members who stop by for 5 minutes just to say hello and see if there is anything they can do, or a prego sister with a little critter running around in her belly who calls and gchats you whenever she has a chance. To me these people are strong, a strong family who keeps it together when times are tough and something unforeseen has struck. That’s strength to me. The people around me are the strong ones. I tend to put up this front and act like everything is fine all the time(and yes mom everything is ok right now so stop worrying) , but without strong people around me I wouldn’t be getting through all of this as well as I am. This whole experience has really made me realize how lucky I am to have such a fantastic family.
Thank you to all my friends and family that have supported me up to this point. I will remember everything you all have done for me, even the little things, especially the little things. Thanks to all you out of towners that have made time for me when you have been in town, it means a lot to me when you make time to see me, and thanks to all the friends of my family that have supported me and gone to events at the Zoo. I can’t wait till I am healthy enough to get back to work! I am chomping at the bit to get back. Most importantly thanks for believing in me, especially when I don’t believe in myself. Team Paul is strong and im working on shirts for real. Sorry if this post is a little unorganized, I just started typing about 1:30am and I’m way too tired to proof read right now.
Paul
Speaking of the last two rounds, I am pretty much expecting to be spending the last two months in the hospital. My blood counts dropped so fast after round four, I can only expect them to do the same after the last two rounds. It sounds a little pessimistic which I am not trying to be, but I am not exactly excited for these last two rounds. The previous two rounds have been all sorts of hell for me and I think realistically the last two will be the same or worse. I’d like to think that these last two rounds will be a piece of cake, but again realistically my aches and pains haven’t had enough time to heal completely in between rounds, so when I get hit with the next round of chemo the pain just seems to get worse. One kind of annoying thing that has gone on in between the latest round and now is my eye brows and eye lashes are finally falling out. Being bald hasn’t been bad at all, some people (girls) have even said I look good bald, but I have been dreading losing my eye hair. Its annoying because I keep having to fish eye lash after eye lash out of my eyes. Of course they don’t just fall out down my cheek, but they get stuck in my eyes which has been a real pain in the ass.
One fun thing that happened during my last hospital stay, was my mom brought me some chips, salsa, and guacamole and I had a little hospital party in my room. I got some of the nurses to stop in and have an afternoon snack and hang out with me for a little bit. We had some good convo and some laughs which was really nice for me. It made me feel like I wasn’t a sickly patient for a while. As I have made it known the people that take care of me are very special people. The nurses and aids have made this whole process so much easier for me. I was talking to two of them at the end of one of their shifts and they said they have gotten to know a couple of patients really well over the years, patients that have had lymphomas and other intense cancers, but those patients don’t come back and see them as much as they’d like. I was pretty up front with sarah and liz when I said that would not be the case with me. I plan on stopping by and bringing them goodies on a pretty regular basis. I honestly can’t imagine some of these women not being in my life for a long time to come. Whether its meeting them out for a few drinks or just stopping by the 5th floor on my way home and saying hi, these are amazing people that I feel could only benefit my life after cancer. It makes me sad each and every patient that passes through the fifth floor doesn’t get the chance to get to know each and every nurse like I have.
I start my fifth round today. It is my last odd cycle. I am not a big fan of the odd cycles. The drugs really start to get to me after about day four and its really hard to keep a smile on my face. I have gotten a lot of emails and facebook messages from people telling me how strong I am, but this cycle doesn’t make me feel strong. The whole process doesn’t make me feel strong. When I get done with a cycle in the hospital, I go home and I’m exhausted and feel torn down for about 2 weeks. It is a lot of work for me to get up and make myself food and really do anything. I can’t take myself anywhere, I need a parental chauffer to go to dr’s appointment and go grocery shopping, don’t get me wrong I can take care of myself, but it gets really hard to agree with people telling me I have great strength. I know there are all kinds of strength and I get where people are coming from, but it just gets really hard to agree with their assessments a lot of the time. I would say the people that are strong are my nurses, who come to work every day and help people who are fighting the fight of their life without so much as a thank you sometimes. When they have to leave their new born baby, or sick child to come work a 12 hour shift and help a 26 year old lymphoma patient or the new patient that just came out of surgery and can’t get themselves out of bed. To me that is strength. Or a mother who brings her son lunch and dinner almost every day in the hospital so he doesn’t have to make himself sick by eating the slop served by the hospital each day. Also, a father who comes three times a day and sits by his only son’s bed just to make sure everything is ok. Even in the early morning when said son is asleep, but he still is there drinking his coffee and doing sudokus or reading what looks like a terribly boring book about a French WWII general and Prime minister. Or the cousin who will never let you run out of cheez-its, or an uncle who pops in every day on his lunch break to check in, even if that uncle is also your doctor, or an aunt that sends reassuring and funny emails when you need some support, or other family members who stop by for 5 minutes just to say hello and see if there is anything they can do, or a prego sister with a little critter running around in her belly who calls and gchats you whenever she has a chance. To me these people are strong, a strong family who keeps it together when times are tough and something unforeseen has struck. That’s strength to me. The people around me are the strong ones. I tend to put up this front and act like everything is fine all the time(and yes mom everything is ok right now so stop worrying) , but without strong people around me I wouldn’t be getting through all of this as well as I am. This whole experience has really made me realize how lucky I am to have such a fantastic family.
Thank you to all my friends and family that have supported me up to this point. I will remember everything you all have done for me, even the little things, especially the little things. Thanks to all you out of towners that have made time for me when you have been in town, it means a lot to me when you make time to see me, and thanks to all the friends of my family that have supported me and gone to events at the Zoo. I can’t wait till I am healthy enough to get back to work! I am chomping at the bit to get back. Most importantly thanks for believing in me, especially when I don’t believe in myself. Team Paul is strong and im working on shirts for real. Sorry if this post is a little unorganized, I just started typing about 1:30am and I’m way too tired to proof read right now.
Paul
Thursday, August 18, 2011
Round 4
Sorry it has been a while since my last post. I really haven’t known what to say. Every time I get in the mood to write something I just think no, nobody wants to hear about that and I put my computer away.
I started round four yesterday, a day late. My blood counts were too low to start on Monday so I had to get a shot of neupagin and my WBC count shot up to 11,000 so I was ready to start on Tuesday. I had to wait a little bit longer to get into the hospital because the cancer floor was full, but that gave me time to have lunch with my dad and get the nurses a special treat. I got them cupcakes from Cup Cake a La Mode on the Plaza. It was a treat they all very much deserve. The group of nurses that work on the 5th floor are truly amazing. They make my treatments and other trips as delightful as they can possibly be. If they didn’t all have the upbeat attitudes and show how much they love coming to work and taking care of us patients, then my experience wouldn’t be so positive to this point. Don’t get me wrong, I like all my doctors and they have taken great care of me, but like I said before these nurses deserve all the little goodies I bring them 100 times over. I could rave about how amazing my nurses are for multiple blogs, but I have some plans for things I can do for them and other patients in the future during my last few treatments.
There is another event at the Zoo tomorrow night. A Pint’s for Penguins event. I believe a lot of my family members and friends of the family are going to support me. This is their second event at the Zoo they have all gone too. I would like to thank everyone who is involved from the bottom of my heart. Please enjoy yourself and have a beer or two for me!
Anyways, I put the shirt idea on hold for a little while, but I am now making designs for them. My mom and I decided to make buttons which are a hit in the hospital and she plans on giving out to family and other people at the Zoo tonight, we will be making more. But I will be looking into making shirts again, because an old acquaintance from Miege and Kstate, Jerod Eller sent me a message about a lot of things, the shirts being one and he was volunteered to help me out. Good people are seriously around every corner. I have received several messages from people I haven’t spoken to in a while like Jerod, that have given me so much love and support over these trying times. I have also gotten messages from people I hardly even knew in high school and in grade school for that matter, telling me they admire my strength and courage, but I think it takes a lot of both of those traits to reach out to someone you hardly know. Especially when you are writing a letter that is not generic and has a lot of your real feelings in it. It just makes me realize how many special people are in and around our lives that we don’t even know about, you know the people that we walk by every day and smile at or wave to, but never really take the time to get to know. I think that will change for me after everything here is said and done. Wow, just thinking now that means I am turning into my father. My dad knows someone everywhere and that’s what im talking about. Talking to more people, just being a little more friendly in the gas station and at the Zoo, making a new friend every day. Well maybe ill have to start watching and learning from the pops, no pressure dad.
Well I am almost done with my 22 hour Methotrexate. I don’t have an intrathecal Chemo this round which im happy about, I love the nurses down there, go figure, but I do not enjoy the need in my spine and lying flat on my back for 4 hrs after especially while receiving Lasix to get all the unwanted fluid out of my body. Really having to pee every 45 minutes is not too much fun to maneuver when you have to lie flat. After the Methotrexate I start either 3 or 4 rounds of Carbonate, then I should be able to go. I have to wait 12 hours in between each round, Im not sure how long each round takes, but my guess is 2-4 hours. Anywho, I will try to keep you up dated a few more time before I am done with this round. I know I have a lot more to say about the last month, I just can’t think what it is right now. Also, teaching mom how to text…BAD IDEA (just kidding mom).
Tuesday, July 19, 2011
A couple of things
There were a couple other things i wanted to share before i start my 3rd round of chemo. Well actually before i forget and then mention them a ways down the road when they are all way out of context and i have you the readers saying what in the heck does that have to do with anything?
I would like to thank all the guys that went through with it and shaved their heads in support of me. Shout outs to Tyler Smith, Ryan Ottoway, Joe Bergkamp, Dad, Uncle Frank, Jake Quigley (in Cuba), Eric Knight, and Jaime Verbeckmoes. I am in the process of getting an album of myself and all these dudes beautiful bald or baldish heads together and will have it on facebook. After i get all the photos i might work on some sort of photo collage for this blog, because i have that much time. If you see one of these guys out and about tell them how awesome they are.
I reached out to a friend of mine from college named Kyle. His wife has Leukemia and has been battling it for over a year. Her name is Shea and she recently had a bone marrow transplant and has a really inspirational story. If you have the time please check out her Caring Bridge site and let her know how amazing and strong she is. I have requested a that they send me a Team Shea shirt, so i can wear it in support of them. Just by knowing what a great guy Kyle is and reading all about Shea's journey i am truly inspired to be more upbeat and try to have more fun with my life while i go through my remaining cycles. I am going to work on making some Team Paul shirts for all of you that are interested in taking my fight to the next level.
http://www.caringbridge.org/visit/sheakohman
The Zoo is having their next fundraiser for Penguins on July 27. Here is a little info about the event from the event description on Facebook:
How can you help bring penguins to the Zoo? Join us for a fun-raiser at Flights for Flippers on Wednesday, July 27 from 5 to 8 p.m. in Africa. Sample wines, taste savory appetizers from Coal Vines Pizza and Wine Bar, take a boat ride on the lagoon, enter to win fabulous prizes plus, take a ride on the New African Sky Safari from 5 to 7:30 p.m.
Jam with The Shanks from 5:30 to 7:30 p.m. The Shanks play a wide variety of songs for every audience, and they have a great stage show!
Tickets are $20 for Friends of the Zoo (FOTZ) Members and $30 for Non-FOTZ Members. Become a Friends of the Zoo (FOTZ) Member Today to earn the $10 per person discount to Flights for Flippers! Tickets are available on www.kansascityzoo.org.
***Please note that this is a 21 and older event. No refunds will be given after registration closes; however, you may transfer your tickets to another name.
I am going to try to get some shirt made and delivered before the event so if you are interested in supporting me and the ZOO, you can go to the event in style!
Well i gotta go, time to get the old blood counts checked and see if i can start round three of chemo today or tomorrow. I'm going to work some pictures into my blog during the next week or so. Maybe including a few friendly faces from around the hospital so even if you can't make it to visit me, you can see the wonderful people that take care of me while im at my home away from home.
Paul
I would like to thank all the guys that went through with it and shaved their heads in support of me. Shout outs to Tyler Smith, Ryan Ottoway, Joe Bergkamp, Dad, Uncle Frank, Jake Quigley (in Cuba), Eric Knight, and Jaime Verbeckmoes. I am in the process of getting an album of myself and all these dudes beautiful bald or baldish heads together and will have it on facebook. After i get all the photos i might work on some sort of photo collage for this blog, because i have that much time. If you see one of these guys out and about tell them how awesome they are.
I reached out to a friend of mine from college named Kyle. His wife has Leukemia and has been battling it for over a year. Her name is Shea and she recently had a bone marrow transplant and has a really inspirational story. If you have the time please check out her Caring Bridge site and let her know how amazing and strong she is. I have requested a that they send me a Team Shea shirt, so i can wear it in support of them. Just by knowing what a great guy Kyle is and reading all about Shea's journey i am truly inspired to be more upbeat and try to have more fun with my life while i go through my remaining cycles. I am going to work on making some Team Paul shirts for all of you that are interested in taking my fight to the next level.
http://www.caringbridge.org/visit/sheakohman
The Zoo is having their next fundraiser for Penguins on July 27. Here is a little info about the event from the event description on Facebook:
How can you help bring penguins to the Zoo? Join us for a fun-raiser at Flights for Flippers on Wednesday, July 27 from 5 to 8 p.m. in Africa. Sample wines, taste savory appetizers from Coal Vines Pizza and Wine Bar, take a boat ride on the lagoon, enter to win fabulous prizes plus, take a ride on the New African Sky Safari from 5 to 7:30 p.m.
Jam with The Shanks from 5:30 to 7:30 p.m. The Shanks play a wide variety of songs for every audience, and they have a great stage show!
Tickets are $20 for Friends of the Zoo (FOTZ) Members and $30 for Non-FOTZ Members. Become a Friends of the Zoo (FOTZ) Member Today to earn the $10 per person discount to Flights for Flippers! Tickets are available on www.kansascityzoo.org.
***Please note that this is a 21 and older event. No refunds will be given after registration closes; however, you may transfer your tickets to another name.
I am going to try to get some shirt made and delivered before the event so if you are interested in supporting me and the ZOO, you can go to the event in style!
Well i gotta go, time to get the old blood counts checked and see if i can start round three of chemo today or tomorrow. I'm going to work some pictures into my blog during the next week or so. Maybe including a few friendly faces from around the hospital so even if you can't make it to visit me, you can see the wonderful people that take care of me while im at my home away from home.
Paul
Sunday, July 17, 2011
Big News
A couple weeks ago i started doing some research. I started doing research on Burkitts and the Hyper CVAD treatment that i am undergoing. I decided it was time that i take charge and know what is really going on in my body. I also reached out to the Leukemia and Lymphoma society and talked to a few people that had gone through the same Burkitts diagnosis as me at or around my age. After hearing there stories a few things just weren't adding up. After doing some research on the Hyper CVAD treatment i found out that there is a maximum of 8 cycles. There is an A cycle and a B cycle or odd and even. Each cycle counts as one cycle instead of both rounds counting as one cycle. I got really excited after doing all this research because that meant that the number of treatments i had originally thought i had to do would be cut in half. Thinking i had 10 more treatments after the last one was mind boggling. I mean i was starting to really doubt that i could do that and it turns out that i don't have to. I spoke with my doctor last friday and he clarified everything for me. I have 6 total cycles, which means i will be done sometime in October, that is if i can ever start my third treatment. I thought i should share a little info about Burkitts with you all so you can get a better understanding of what this crap actually is. So here he go. by the way this is a copy and paste job, just so you know:
Burkitt's Lymphoma, a very rare form of cancer with about only 300 new cases a year in the United States. Burkitt's Lymphoma, rare in most of the world, is the most common childhood cancer in Central Africa, and is one of the most aggressive of all human cancers.
Burkitt's lymphoma is one type of a group of malignant diseases know as the Non-Hodgkin's Lymphomas (NHL). These lymphomas are very similar to the leukemias. The type of malignant cell present is called a B-cell and Burkitt's is often referred to as a B-cell lymphoma or leukemia.
As with other cancers, the exact cause is not known. Burkitt's is the most common in children in Africa and there is some evidence linking its cause there to a virus known as the Epstein-Barr virus. Outside of Africa, chromosomal defects in some of the patient's cells may be the cause. Children still seem to be the most affected, but there are cases of adults with Burkitt's.
This malignancy grows very rapidly and a person who appeared in good health a month or 6 weeks ago may now be critically ill. (The tumor can replicate in 25 hrs)
The diagnosis of Burkitt's is usually made by a biopsy from a suspected disease site such as the bone marrow or a lymph node. The staging of the disease is done quickly to spare the patient any life threatening complications from the rapid tumor growth. Common tests done include a complete blood count (CBC), a platelet count, a bone marrow aspiration and biopsy and a lumbar puncture. Further tests may include radiographic exams such as CT scan to look for occult masses but usually extensive x-ray procedures are not required.
So that's a little bit of info on what Burkitt's is. I will have another post in the next couple of days.
Burkitt's Lymphoma, a very rare form of cancer with about only 300 new cases a year in the United States. Burkitt's Lymphoma, rare in most of the world, is the most common childhood cancer in Central Africa, and is one of the most aggressive of all human cancers.
Burkitt's lymphoma is one type of a group of malignant diseases know as the Non-Hodgkin's Lymphomas (NHL). These lymphomas are very similar to the leukemias. The type of malignant cell present is called a B-cell and Burkitt's is often referred to as a B-cell lymphoma or leukemia.
As with other cancers, the exact cause is not known. Burkitt's is the most common in children in Africa and there is some evidence linking its cause there to a virus known as the Epstein-Barr virus. Outside of Africa, chromosomal defects in some of the patient's cells may be the cause. Children still seem to be the most affected, but there are cases of adults with Burkitt's.
This malignancy grows very rapidly and a person who appeared in good health a month or 6 weeks ago may now be critically ill. (The tumor can replicate in 25 hrs)
The diagnosis of Burkitt's is usually made by a biopsy from a suspected disease site such as the bone marrow or a lymph node. The staging of the disease is done quickly to spare the patient any life threatening complications from the rapid tumor growth. Common tests done include a complete blood count (CBC), a platelet count, a bone marrow aspiration and biopsy and a lumbar puncture. Further tests may include radiographic exams such as CT scan to look for occult masses but usually extensive x-ray procedures are not required.
So that's a little bit of info on what Burkitt's is. I will have another post in the next couple of days.
Thursday, June 30, 2011
Two Down, Ten to go
This inpatient session wasn’t as nearly as hard as the first one. Although by the end I was getting restless, 4 days is much more doable than 6. I still have the same outpatient cycle this coming week as I did the first time, but I am much more ready for it this go around. I am in the middle of my search for a new hobby. I have considered building model cars/ planes and even things like knitting. I have to find something to do so that when I get “chemo- brain” as one nurse called it, I can still occupy my time and not just sit around and get bored. I am glad I am getting out today, I was starting to have weird dreams last night, that was one of the hardest parts of the first round was the strange dreams I was having. I would wake up and be out of it for a little bit, one time I had to pull up membership reports on my computer to convince myself I was really awake and pull my mind back into the real world.
Barring any major setbacks like another infection, I fully plan on going to work after my blood counts go back up. It will most likely only be for a day or two, but it will be nice to get back and help out where ever I can.
Monday june 27, 2011
Ugh, I thought I would feel better this time, but nope. I took myself to my dr’s appointment today and that was a mistake. I felt fine most of the day because I was inside my own little box, once I got outside I started having hot flashes and everything hit me all at once. Luckily for me, my appointment took all of 5 minutes, but I will definitely not be taking myself to any more appointments the day after a chemo treatment. Im going to have to stay in my box of an apartment for a while longer from now on. So if you want to see me that’s where ill be. When I get the energy I will get up, but especially the first couple days after a treatment, don’t expect much from me. The fact that I can’t do anything is starting to annoy me, but as long as I don’t get sick this time, ill be a happy camper.
Barring any major setbacks like another infection, I fully plan on going to work after my blood counts go back up. It will most likely only be for a day or two, but it will be nice to get back and help out where ever I can.
Monday june 27, 2011
Ugh, I thought I would feel better this time, but nope. I took myself to my dr’s appointment today and that was a mistake. I felt fine most of the day because I was inside my own little box, once I got outside I started having hot flashes and everything hit me all at once. Luckily for me, my appointment took all of 5 minutes, but I will definitely not be taking myself to any more appointments the day after a chemo treatment. Im going to have to stay in my box of an apartment for a while longer from now on. So if you want to see me that’s where ill be. When I get the energy I will get up, but especially the first couple days after a treatment, don’t expect much from me. The fact that I can’t do anything is starting to annoy me, but as long as I don’t get sick this time, ill be a happy camper.
Monday, June 20, 2011
One down, Eleven to go
Been gone for a minute, but now I’m back again. The last 3 weeks have been anything but normal for me and if they are a sign of what is yet to come, chemo is going to be a physical and emotional roller-coaster ride from hell.
I started to write this post in a lot of little segments, I decided about ¾ of the way through to start over. I decided giving a straight account of what was happening day by day was boring and a waste of all of our time. I mean the length on something like that was going to unreal, plus I’ve always been a cliff notes kind of reader, browsing the highlights can be much more fun than reading the entire text.
I went into this first treatment feeling so confident about how I would handle it. I thought to myself, “this is going to be the easy one”. I was confident in the facts that this chemo would be the easy because I was already so healthy that my body can handle whatever they throw my way. Looking back on it now, I can honestly say that if every chemo is as hardcore as the last one, I don’t know how I am going to make it through the next nine months. Never in my life have I felt so beaten and weak. The past couple of weeks have made my body feel like it is tear itself apart from the inside out. One thing that has been running through my mind for the past week or so is that sometimes it’s incredibly hard to find strength in pain. Finally getting done with outpatient chemo and then immediately getting sick was almost the event that broke me. Being admitted back to the hospital for another week was the last thing I needed at the time. After the first day my hospital room started to close in. It felt similar to my room in Malawi, my room that I often referred to as my cell. The one good thing that kept my spirits up were the nurses. I mean don’t get me wrong it was great to have my family around, but the nurses and their positive attitudes make me feel a lot better about my situation.
I wrote a few tidbits while I was in the hospital for chemo, the only one that is really worth sharing was my description about my hypersensitive reaction to my first drug, rituxan. Everything started off normal, but when the rate the medicine was given was increased my body had a bit of a freak out, enjoy:
At first I thought I had to go to the bathroom #2, but that didn’t work and the pain got worse. My nurses were very very good, and most important of all the didn’t freak out when they saw how much pain I was in. Calm, cool and collective. The session lasted about 45 minutes. It was the second worst pains I have ever had in my life. In between crying and being short of breath, the nurses were there for me and tried their best to keep me calm. Later in the day, one of the nurses mentioned that I wasn’t cursing through the entire thing and that made me think about all of it. I was still trying to be respectful for the other people in the room. I said the letter F a few times and they said, let it out we have heard it all before, that was comforting, but I still had no intention to be loud and obnoxious even though I had unbelievable pain. That always pisses me off, when someone is working as fast as they possibly can, doing everything they can for you and someone else is screaming at them or in their direction, and/ or they are saying hurry up move faster, blah blah blah. That’s not who I am, and I will be disappointed if that’s who I ever turn out to be.
Overall the past few weeks have been quite the learning experience. Like I said before I felt weak and beaten, but not broken. It has taken a lot of thought and personal time, but I have gotten stronger over the past few weeks. I registered with the Mid- American chapter of the Leukemia and Lymphoma Society, I have started to reach out. I have fully admitted to myself that I have Cancer. I have come a long way from the random times that I would break down in tears trying to convince myself this was all just a bad dream. I know now this is not a bad dream, this is my life and I have to use the strength I have, however little that may be sometimes and fight with it. One down, eleven to go.
P.S. For all of you that are planning on losing your hair with me, get ready, my shedding has begun.
Also, don’t forget to donate to Laura Park’s Team in Training, and go out and buy your 2011 Zoo memberships! Thank you so very much to the people that went out and got their Zoo membership or donated to Laura after my first post. I will try to keep in touch more, round two of chemo starts on Thursday; wish me luck.
I started to write this post in a lot of little segments, I decided about ¾ of the way through to start over. I decided giving a straight account of what was happening day by day was boring and a waste of all of our time. I mean the length on something like that was going to unreal, plus I’ve always been a cliff notes kind of reader, browsing the highlights can be much more fun than reading the entire text.
I went into this first treatment feeling so confident about how I would handle it. I thought to myself, “this is going to be the easy one”. I was confident in the facts that this chemo would be the easy because I was already so healthy that my body can handle whatever they throw my way. Looking back on it now, I can honestly say that if every chemo is as hardcore as the last one, I don’t know how I am going to make it through the next nine months. Never in my life have I felt so beaten and weak. The past couple of weeks have made my body feel like it is tear itself apart from the inside out. One thing that has been running through my mind for the past week or so is that sometimes it’s incredibly hard to find strength in pain. Finally getting done with outpatient chemo and then immediately getting sick was almost the event that broke me. Being admitted back to the hospital for another week was the last thing I needed at the time. After the first day my hospital room started to close in. It felt similar to my room in Malawi, my room that I often referred to as my cell. The one good thing that kept my spirits up were the nurses. I mean don’t get me wrong it was great to have my family around, but the nurses and their positive attitudes make me feel a lot better about my situation.
I wrote a few tidbits while I was in the hospital for chemo, the only one that is really worth sharing was my description about my hypersensitive reaction to my first drug, rituxan. Everything started off normal, but when the rate the medicine was given was increased my body had a bit of a freak out, enjoy:
At first I thought I had to go to the bathroom #2, but that didn’t work and the pain got worse. My nurses were very very good, and most important of all the didn’t freak out when they saw how much pain I was in. Calm, cool and collective. The session lasted about 45 minutes. It was the second worst pains I have ever had in my life. In between crying and being short of breath, the nurses were there for me and tried their best to keep me calm. Later in the day, one of the nurses mentioned that I wasn’t cursing through the entire thing and that made me think about all of it. I was still trying to be respectful for the other people in the room. I said the letter F a few times and they said, let it out we have heard it all before, that was comforting, but I still had no intention to be loud and obnoxious even though I had unbelievable pain. That always pisses me off, when someone is working as fast as they possibly can, doing everything they can for you and someone else is screaming at them or in their direction, and/ or they are saying hurry up move faster, blah blah blah. That’s not who I am, and I will be disappointed if that’s who I ever turn out to be.
Overall the past few weeks have been quite the learning experience. Like I said before I felt weak and beaten, but not broken. It has taken a lot of thought and personal time, but I have gotten stronger over the past few weeks. I registered with the Mid- American chapter of the Leukemia and Lymphoma Society, I have started to reach out. I have fully admitted to myself that I have Cancer. I have come a long way from the random times that I would break down in tears trying to convince myself this was all just a bad dream. I know now this is not a bad dream, this is my life and I have to use the strength I have, however little that may be sometimes and fight with it. One down, eleven to go.
P.S. For all of you that are planning on losing your hair with me, get ready, my shedding has begun.
Also, don’t forget to donate to Laura Park’s Team in Training, and go out and buy your 2011 Zoo memberships! Thank you so very much to the people that went out and got their Zoo membership or donated to Laura after my first post. I will try to keep in touch more, round two of chemo starts on Thursday; wish me luck.
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