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).

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

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.

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.

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.

And so it begins...

Burkitts Lymphoma

On April 27, 2011 I was admitted to St. Luke’s hospital in Kansas City, MO. Earlier that morning I had a CT scan of my abdomen that revealed I had a tumor the size of a large orange in the left side of my small intestine. The next day I was scheduled for a biopsy that turned into a major stomach surgery to remove the tumor, 2 ½ feet of my small intestine, and other lymph nodes that looked to be inflamed. After the surgery I honestly did not think things could get much worse. I have devoted most of my life to helping other people and now I was completely helpless, a feeling that I am not used to and did not enjoy one bit. After the surgery I had convinced myself that the tumor was malignant and the worst of everything was over. I mean I have been sick for almost a straight year at that point. Nine months prior having the pulmonary embolisms (blood clots in my lungs) and now possibly having cancer, nope that’s not possible, not for me. When my uncle came into to tell me the results and diagnosis that I indeed had Burkitt’s Lymphoma I was so pissed off. I was pissed off, because I don’t deserve this, I was pissed off because this is just my luck, I was pissed off because I knew I was going to lose my job(I didn’t btw, but we’ll get back to that), I was pissed off because I hate when I can’t do something myself, I was pissed off because no one else would understand, and I was mostly pissed off because I was scared shitless and it sometimes seems easier to appear mad than sad, scared, and so on and so forth. Uncertainty is a scary thing. I still get a little pissy from time to time about everything that’s going on, but as people that really know me can tell you, I can get that way from time to time. I am not so much scared now about the overall outcome. I am going beat the shit out of this cancer, the aggressive Chemo regiment I am going on has a 98% cure rate. Burkitt’s is very beatable and I am going to do it. I am not scared I am going to lose my job, the KC Zoo has really bent over backwards for me and shown me what a wonderful organization they are and that there are just good people working there. I’d like to thank my bosses Julie and Katie; you didn’t have to be as great as you have been about everything. The fact that you are willing to work with me so much gives me so much confidence on so many levels, besides being great supervisors you have shown my family and I what beautiful people you are and we will never forget it. On a side note, I am not above shameless plugging, so help a brother out and GO OUT TO THE ZOO TODAY AND BUY A MEMBERSHIP.
The rest of my time in the hospital I was able to do a lot of thinking. I have got to further that thinking since I have been released and recovering at home/ awaiting my first chemo treatment. I kept going back and forth on whether or not I was going to write a blog. That decision was practically made for me when a few girls from Miege and Kstate started a collection for me. They got over 40 people to donate to buy me an I-Pad and other things to help me through Chemo. Words cannot describe how I felt when I opened the gift and saw the I-Pad, and then when I read the card and it had all the people’s names who donated on it. To feel loved is such an uplifting feeling. Even though I it might seem I am tired of talking about what’s going on, don’t be afraid to ask me for the latest update or just some general info on what’s going on. If you really think I don’t want to talk about it then give my mom a call, she will fill you in on all the details thus far.
It’s going to be a long, tough, and painful journey over the next 9 months. My chemo regiment is broken down into 6- 6 week cycles. Each cycle has two three week periods that I be admitted into the hospital for 4-6 day treatments. So every 3 weeks for the next 9 months I will be at St. Luke’s Hospital on the plaza for 4 to 6 days, depending on the treatment. Feel free to stop by and visit me, even if I am feeling pretty down and I’m not up to talking a lot, just knowing you are there means a lot to me. The little things mean a lot to me, they always have. Like Laura Parks a friend from Miege is running in a marathon in San Francisco to raise money for the Leukemia and Lymphoma Society. Although, she is not doing it just for me, she added a little bit about me and my situation in her story on her donation page. When I read it all I could think about was how can I help Laura achieve her goal. So if you know Laura and even if you don’t you should probably float a few bucks her way to help our cause. I know what you are thinking right now and you are absolutely right, it is becoming expensive to be my friend, but hey that’s life my friend! I have met so many great people in my life and travels. A guy I met while working with Planet Aid named Marcus and he is going to submit my story to Rockin’ out Cancer a benefit rock concert in Columbus, Ohio. The proceeds will be split between The James Cancer Hospital and a family that is fighting the fight of a lifetime. Marcus has been a great friend and I was lucky to have met him and so many other great people while I worked for Planet Aid.
Well it’s getting late and I need to at least try and get some sleep, I’ve got a big day tomorrow! In reality I am probably not going to sleep much tonight, but I should at least try. To all my friends and family that have been there for me so far, thank you. To all the people that have kept me and my family in their thoughts and prayers, thank you. To all the people at the Zoo who have welcomed me into the zoo family, thank you. To all the people that read this blog and go out and buy a zoo membership and/or donate to Laura’s cause, thank you. And to Jenna and the KU nurses I met this past weekend that are going to set me up with a nice pretty lady, THANK YOU! Remember people, I’m just starting chemo, I’m not dead! I am still a single guy, who my mom would tell you is a very good catch (if you need a reference). Just remember she must like bald guys, because by the end of this week or early next week I will be hairless, which brings up another thank you. To all my friends and family that are going to join me in this journey and shave their heads, thank you. Oh and Madre Raya, keep those flautas coming, they are magnificent! I will keep you all updated, I love you and good night!