May 24, 2010

I’m Back!

Hello, hello! This is Dakota Graves dot com. I’m Dakota Graves. I used to post on here  often but I had to kinda of abandon my blog after the events of the summer and fall. I just didn’t have the time to keep it in order. Now that I do, I’m back to writing and posting! A lot, and next to nothing is going on this summer so there will be plenty of time for writing posts! I’ll showcase some of my personal projects like the building of SinceNerdy (a new website aimed at nerd news and nerdom in the midwest), my continuing film and photography interests, my adventures out in the world, I’ll rant and rave about things (comic books, films etc), and talk about some my experiences with testicular cancer. If any of these things sound like they may be of interest to you then stick around!

December 2, 2009

New Directions

You may have noticed that most of my projects have been on hold as of late, including A Nerd’s Guide To The Universe(S). Since I have finished chemo I have had a lot going on and have pulled most of my projects in order to revamp and start fresh. I will be back to the connected world very soon, but for now everything is on indefinite hiatus. I have several projects in the pipeline, so hopefully it will be sooner rather than later.

See you soon.

October 12, 2009

Curtain Call and Final Bows

Wow. How do you start a blog like this? I’m writing this on my iPhone as I’m leaving Indianapolis (a good a place as any to start I guess).

As many of you know I was referred to a testicular cancer specialist, the same who attended to Lance Armstrong. This Doctor’s offices are at Indiana University’s main campus in Indianapolis. As I said in my last blog, Waiting…, I finished chemotherapy at the end of September. Friday the 9th I went to Louisville to confirm test results and today I came here to Indy to get official answers. THE official answer on where my life goes from here or if I’m still sick. Or the most important question, whether or not my life belongs to me again.

Ok. Deep breath.

The answer is yes. My life belongs to me again. I am officially cancer free. After 4 1/2 months of surgeries, chemo, plastic things in my chest and hardships, I am finally free.

There are 8 spots left in my lungs but they are all extremely tiny. The largest on being under 6 milimeters. Not even large enough for a biopsy. However, the doctors are confident that these are just dead tissue left over from the cancer and chemotherapy that will fade away in time. Both my lungs and my brain are completely clean. No spreading, not even scar tissue

I did it when I was 16 and now I have managed it again. I have beaten cancer for the second time in my life, something that will never cease to amaze me and make me proud. After the doctor congratulated my parents and I he left the room. I stood to stand and walked a few paces. I stopped in the doorway and it hit me. I started crying right there, the only time in my entire life that I have felt that way. It is an unbelievable, overbearing and amazing feeling. It dominates every sense you have while you experience it. This may seem terribly overdramatic but unless you’ve had cancer yourself it’s impossible to articulate.

I am so happy and so thankful to all the people who have supported me through this. All of the guys from A Nerd’s Guide To The Universe(S) and the rest of my best friends, all of the people from Northern, my family, Caitlen Driver, everyone from Baptist East and CBC in Louisville, my professors and the staff at NKU for understanding. I am so grateful for how supportive everyone has been and that they have been a part of my life. Thank you. There are not words in any language that could possibly convey that properly.

I’m sorry I couldn’t get this to everybody sooner. My phone died and I didn’t mean to scare anyone with my statuses earlier, I love you all for helping me through this.

October 6, 2009

Waiting…

So, I’ve been wanting to write one of these but it means I actually have to confront the things that are scaring the shit out of me right now so I haven’t just been ready to jump on the band wagon. Here’s whats up:

I was originally prescribed 4 rounds of chemotherapy. The fourth round ended with the last few weeks of September, and let me tell you, it was the absolute worst experience I have ever had in my life. I was EXTREMELY sick. I usually throw and stay sick up for 3-4 days after chemo tops before I start recovering. I was sick for about 2 weeks this time and my immune system degraded bad enough to the point that I had to have a blood transfusion. My white blood cells, platelets and etc were so low that they could belive I was able to function.

So the question is, now that the 4th round is done what happens?

Well I have gotten a bunch of tests and tomorrow I go in for more. Friday Oct 9th I see my regular Oncologist and Monday  Oct 12th I travel to Indianapolis to see my Testicular Cancer Specialist Oncologist. Its then, (probably Monday) that I will learn what comes next. Am I good to go? Is the cancer still there? Will I have to have more chemo or not? What about radiation? Or surgery? These are very real issues but I’ll just have to wait and see.

As you can imagine, I am not a happy camper right now.

September 28, 2009

A Nerd’s Guide To The Universe(S)- Episode 12!!

August 6, 2009

Just Past The Halfway Mark

I feel like I should be writing more of these but it’s really hard to motivate myself to sit down and take the time. Oh well, I think I’m allowed to be a little laze right now, right? Anyways nothing major has changed since my last blog. I’m still going through chemo, the only thing I have to report is how I am handling it.

I just finished my second week in the hospital. That means I am halfway through(!) so I’m pretty happy about that but these first two cycles have been pretty rough. Just to remind you what I mean by a cycle, it is one week in the hospital and two weeks rest. I have to have four of these and I just finished my first two.

The first week was the roughest. I cannot take a medicine called Phenrygen. It’s anti-nausea and anxiety medicine. Most people love it. It’s helps them relax and deal with the pain. I think you know where I’m going with this, but once again due to my extreme bad luck I cannot take it. Since I have a unique body chemistry caused by my prevalent adult ADD Phenrygen has the opposite effect on me (caffeine does as well, calming instead of hyperacting). Phenrygen makes me freak out. I know this because the last time I was in chemo (when I was 16) they tried to make me take it. I was having siezures and waking nightmares (really fucked up hallucinations). So this time during my first week I was taking a drug called Compazine. Needless to say I was again having some odd pychological symptoms. For instance my eyes kept trying to roll into the back of my head and I couldn’t move my arms or shoulders very well. I came to find out later that Compazine was a sister drug to Phenrygen. Not as strong, but nonetheless something I quit taking after that first week. Without the mini-siezures my second week in the hospital was much better.

For some reason, I was much sicker my first week in chemo than my second. I would think it would have been the second week that would have made me much sicker as chemo is accumulative. I only threw up a hand full of times the second week compared to the first week’s few dozen. Indeed the worst part (which is actually the first few days after you get out of the hospital) wasn’t as bad the second week either. I was very grateful for this. thinking about it now, it was probably because they changed the way one of my medicines (a name much to complicated to remember) was administered.

Anywho just some thoughts on how the last few weeks have gone.

June 27, 2009

Chemo plans and weird news.

So Thursday of last week I had my major surgery to install my port and remove my right testicle. I didn’t put the exact date in the last note because I was sure when it would be. I think most people probably found out from Facebook that I had surgery anyways. Since then I’ve been in recovery. Very little walking, lots of meds, and some pretty painful muscle issues. You can see picture of my wounds here on my website, on Flickr, or on my Facebook. So, any who I have received two main pieces of information in the last few days.

For starters the pathology has come back on the removed right testicle. The results of those tests have are strange to say the least. I found this news hard to believe but every word of it is true. The results show that my entire right testicle was ONE LARGE TUMOR. The entire testicle was 100% cancer cells. My (normal, Louisville) Urologist was shocked. He had never seen or heard of anything like this before. Testicular cancer works like breast cancer. You feels for lumps, you have ultrasounds and the like to look for the shadows of objects that could be tumors. The reason that I had almost no warning this time my cancer developed, no lumps or shadows on my ultrasounds, was because my entire right testicle was a tumor! Somehow as my cancer developed this time, it replaced every cell in my right testicle with a cancerous one or turned every cell into a cancerous one. Trust me we’re all just as confused on how that could work as you are. My Urologist has gotten in contact with the specialist at IU (The doctor who treated Lance Armstrong, who I went to Indy to see) but no word on that yet. However, this will not affect my chemo. It will still go on as planned. The problem with this is that besides the testicle, every piece of muscle tissue, etc that was taken out in my surgery contained cancer cells. This means that despite earlier tests there maybe microscopic cancer cells in my liver, brain and blood stream. Chemotherapy should kill anything out side of the testicle now, but it is very likely I will have to undergo several cycles of radiation after I finish chemotherapy.

Secondly, I met with my doctors to plan when I will begin chemotherapy. I also found out that because I cannot have Bleomycin (the med from the first time that could destroy my lungs) again that I will have to take a replacement medicine. This replacement medicine has to run 24 hours a day. That means I will have to be admitted to the hospital for the entirety of the first week of every one of my 3 weeks cycles. There was some talk that I would start chemo this  Saturday, but now the date has been moved to Monday June 29th. Yes, that is this Monday, and yes I’m just ecstatic about it, but I take it as it comes. So this coming Monday morning I’ll be getting up bright and early to be admitted to Baptist East in Louisville and begin my chemotherapy. Its finally time to get this show on the road folks so the sooner I get it started the sooner I get it over with.

So, thats where I am right now. I’ll be blogging and showing pictures and video as much as possible through out  this whole experience. Hopefully, I’ll get a redesign and fall into some sort of groove soon. Thanks for all the support. :)

June 26, 2009

My Port

Here are some photo’s of my port I thought were pretty cool. This first one is a diagram of what my port should look like. It’s a cardboard diagram with a real port sitting on top it.

Port diagram

Here is a chest x-ray showing where my port is in my chest. Cool, huh?

My chest x-ray with my port

Finally, here is a close up of my port. You can see the tube come out of it and go into one of my major arteries in my chest.

X-Ray of my port, closeup

June 25, 2009

New pics of my wounds!

Here is a pic of my Orciectomy.
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Here is one of my port right after it was installed.
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Thought I’d show those off…

June 17, 2009

The Good News And The Bad News

Ok, so as most of you know I was going up to Indianapolis to meet with some of world specialists in testicular cancer. The doctor my normal doctor sent me up to see in Indy is actually the same doctor who treated Lance Armstrong!! How cool is that? Anyways, I actually went up yesterday even though my last note said it would be today. I just wrote the date down before it was set in stone. They gave me MORE tests and discussed with me all the possibilities of the disease and the corresponding options of treatment. However, no decisions could be made then. They did get back to me about noon today and that bring us up to speed. Ok, so on to the news.

Good first then? So, like I said in my last post, the cancer that I am afflicted with right now could either be new (the best case scenario) or an older returning cancer (a much, much worse scenario). Well it turns out that my doctor’s think it is a new cancer after all. This is very good news! An old cancer returning would be very bad and would require a prolonged battle and major surgeries, as I heard in full detail yesterday. Not to mention, I would be required to stay in Indy for treatment. Since it is new I will be able to stay in Louisville for my chemotherapy and surgery (Yay!). Tomorrow, June 18th at 11am I will be having my right testicle removed and replaced with a prosthetic. I will start on testosterone replacement therapy immediately afterward but I will need a few weeks of recovery before I can begin chemo.  July 1st or around the beginning of July I will start chemotherapy.

Now onto the bad news. While we know that my treatment will be easier since it is a new cancer it will still be significantly harder that it was when I was 16. First off, I have had so many surgeries in the same area that I have built up a lot of scar tissue. This will make tomorrow’s orchiectomy (removal surgery) more complicated than it would have been. It will also make my recovery harder. The more they have to cut due to previous scar tissue the harder it will be for those (they go in through the pelvis) muscles to recover. The harder it is for those muscles, the harder it will be for me to walk after the surgery.

Secondly, my chemotherapy will have to be a cycle longer (and consequently harder) than it was when I was 16 because of complications I took last time with a medicine called Bleomycin. Bleomycin is a common medicine in fighting testicular cancer, however it can only be taken during one prescribed round of chemotherapy. More than that it can cause serious damage to my lungs ability to process oxygen and potentially cause pulmonary fibrosis. Therefore, my doctors want to avoid those possibilities. My chemotherapy will be 4 cycles instead of the normally prescribed 3. That will amount to at least 12 weeks of chemo but it could be longer than that.

Thirdly, I will have to have a port installed in my chest in order to recieve chemotherapy. This is something I have avoided like crazy. I mean, why would I want to have a tube hanging directly out of my chest? Before I had a small tube hanging out of my arm called a pick line, but this seems like it is a little worse. Maybe I am just over-reacting but I guess we’ll see tommorrow night when I wake up.

So yea, my future for the next few months has been decided. I should be getting out of chemotherapy around the end of September if everything goes well. My birthday is July 10th, so I guess I’ll be in chemo then too, which sucks but the there isn’t anything I can do about it. Obviously I wont be back to NKU as soon as school starts, but I’m hopeful I will be back in the second half of the semester. If I can’t make it back then I will definitely be back in the Spring.

Thanks for continued the support everyone!!

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