Hell Week

WOW!!! The last 8 days have been brutal. Last Sunday at 1:00am I drove myself to the Emergency Room and checked myself in for what I thought was appendicitis. My last scan had showed it was inflamed and my doctor said I should be on the look out for it. Well turns out the pain I was experiencing was from gallbladder. So the next day I had that removed and my appendix as well. In addition last week I had 2 CT Scans, 1 Hydra Scan, 1 Ultrasound, and 2 Chest Xrays. I also had an NG tube placed in me and went through a infinite amount of shots and IV fluids. What a week. I am not gonna lie it really sucked. But you know I had cancer and why shouldn't I also have this. The last 6 months have already been crazy. Maybe things can get back to normalish now. So that's where I have been. It doesn't appear that it was cancer related. Also evidently after my last chemo I had appendicitis and just thought it was chemo side effects. Go figure. Nothing is normal on chemo. If you know about NG tubes you know how much they suck. If you don't go stick a .5in tube through your left nostril and into your stomach. It sucks. Crazy crazy but life goes on.

Thursday

    So Thursday was the day. I would get the results from my CT scan last week and learn whether or not the chemotherapy had done anything to my tumors and if the pain and suffering was worth it. Leading up to Thursday I was very stressed out because I was waiting for the results. I would go back and forth between being excited to be done with chemo, then freaking out because at the beginning of treatment there was a lot of pain and I wasn't sure I was ready to go through that again. In fact I was on break at work Tues and I broke down thinking about the beginning of chemo and how I may have to go through that again. Then a coworker walked in on me. I was glad it was the girl who has been to appointments, was there on my last day of chemo, and saw me with some frequency during treatment. I was a little embarrassed, but she is one of the people who knew what I went through and actually saw it. We are planning our trip to Sunday Brunch for a couple weeks from now. I have been dreaming about that day for almost 5 months. I am so glad that we are going and it will be one of the most important moments of the year for me. Even though cancer is stupid and sucks, it was a whole lot easier with her there.
    So what did my doctor say. He told me the sizes of the tumors and they all are approximately half the size they were last time. I was thinking "OH MY GOD!!!!" I was so happy to hear that. He said I was in partial remission and that we would hold off on another round of chemo until November when I have my next scan. So all I have between now and then is to go get my port flushed. I do have to keep my eyes open because my appendix (I know I still have mine) is inflamed. They said it could be acute appendicitis, but since I am not experiencing any symptoms that is a weird side effect of chemotherapy. If I do end up having more chemo it will not be on EOX, I reach my limit and anymore will screw my heart up. I can honestly say that I have not felt so relieved in my whole life. This week I worked full time for the first time since March. I am calling an FAA doc on Monday about my medical and maybe I will be flying soon as well. We shall see. If I do I have already gotten some more flying opportunities.
     I also want to give a shout out to my friend over at "Cancer in Your Thirties?! F*** " months ago I was up at 3am frustrated that there was nothing about young adults and gastric cancer and I came onto her blog. Well I read hers and started my own. I am so glad I did. If you haven't seen it you totally should by the way.
      Until next time everyone.

Cancer Epic

     Rereading last weeks post I realized I was sounding pretty lost and unsure how to feel about things. This week though and generally over the last month I am starting to reach a place of clarity. Things seem to make more sense and I don't have the anxiety I once had. Sure I have Stage IV GE Junction Cancer and if you just look at numbers surviving it it pretty slim. At the local support group I go to we have been on the topic of death and dying recently. I am starting to get tired of it because I did think about it a bit and the conclusion was that I wanted to make sure that I was LIVING with cancer. So at the group I understand and appreciate the need to talk about dying but I also want to hear how others facing cancer are living. That gives me hope, that gives me inspiration, and that is what I want to hear. This week I went to work for three days and basically back to the point I was when I left. It was nice to do it all. Unfortunately Monday I heard the terrible news that someone from another department that our office worked with had passed away last week. He was diagnosed with Leukemia about two weeks before me. It defiantly felt weird being back and I think I feel a some survivors guilt. I know we didn't have the same disease or experienced the same physical pains, but I still feel weird. I feel bad for those close to me and know about the stats. I worry that they are worried about me under otherwise calm faces and this death really reminded them about that. 

      That is one thing I wish I had the nerve to do more of through out my treatment. I wish I would have pushed a little harder to see how my friends were dealing with my diagnosis. It is something I really wanted to know. I assumed they would tell me at one point and I would hint at it but they wouldn't share. I am going to find out now especially since I just finished treatment. 

     I won't lie that I do feel more than a little joy about just being around to live life and be with those I love. Today I had a CT scan. It was relatively uneventful. During my port access the nurse and I were talking and that conversation has stuck with me. He commented how far I had come since my first day at the oncologist. The first day they tried to draw blood and I passed out because of dehydration and that the fact my blood sugar was so low. I also may have been suffering from anemia at the point as well. In basic words I was in terrible shape. I thought about that and the journey I went through emotionally and spiritually. Lots of people refer to their life dealing with cancer as a journey. I like the word, but why don't we call it a "Cancer Epic". An epic is a long poem of sorts surrounding in which a hero achieves great achievements and its written in very flattering way. The Iliad is an epic if you were wondering. I like that "Cancer Epic". In this tale we are heroes and are surrounded by a group of heroes facing a great evil called cancer. We face many challenges and achieve many things along the way. Those deeds are usually spoken of in an elevated manner. Agree with me or not every patient and caregiver I have ever met has had strength that is too great to describe. Does that mean it is easy, hell no.

     Next week I find out the results of my scan and where we go from here.

Until next time.

What Now?

     So as you know last week was my last cycle of EOX until I get the results from next CT scan. The next scan is on 7/31 and I meet with the doctor on 8/7 to discuss the future. I am back to work mostly. I will be back full time starting on 8/4. Some of you may know that I am Flight Instructor on the side, others may not. Since this whole thing started I haven't had a chance to fly. I will start trying to get my medical certificate back in August with the FAA. I am little anxious since I do not know what the outcome will be. I may have to wait a few months, a few years, or I might be done. Flying was my childhood dream and that's what I went to college for. My full time job during the week is at a desk and has the the all important benefits and pays most of the bills and as I mentioned I returning back to work there. I am pretty sure I will get to fly again but I certainly do miss it. Now to what I wanted to discuss, "What Now?"
      I did that last cycle of EOX and at the moment there are no plans for additional chemotherapy. I defiantly have to say it feels weird to not preparing for another cycle. Heck this week I wasn't even in the clinic. I have to say I find myself saying "What now?" At work this week I was unsure what I should do (beyond having to relearn all the policies and procedures) and got a variety of reactions from different people. My manager is super awesome and has helped me so much through all of this. It is weird cause he is trying to protect me from being harassed too much by folks and trying not to let my cancer story be the meat of the rumor mill. The fact is I didn't really tell very many folks why I was gone for 4.5 months and now I am back. I know my manager sent an email to everyone asking them to respect my privacy and that if I wanted I would talk to them about it. A really nice gesture. I think some folks took it that they literally were not suppose to talk to me. So I felt really awkward when folks would barely say hello. I just am not sure what I should do to be honest. I don't want all my coworkers to make a huge deal about me having cancer, but there isn't a easy way to be like "Oh I had cancer, went through chemotherapy, and faced my own mortality." We will see how next week goes and I will practice the old adage of fake it until you make it. It feels weird coming back to "normal" life after such a traumatic experience. I also feel like I need to help explain cancer for others behalf, which isn't a bad thing. A manager from another department was diagnosed with Leukemia (not sure on type) a few weeks before my diagnosis and he is retired(ing). It seems so crazy that we were diagnosed almost at the same time and I am back and he isn't. Crazy, stupid cancer I guess.
     It has been a while since I have heard the awesome things people say when you have cancer but returning to work this week brought them out and I just had to chuckle. Here are some "You look really good!" (Yeah because I am not bald anymore and not about to pass out) "At least they caught it early" (I am stage IV and it metastasized in my liver, not early at all) "The tumors are gone now at least"(no, I will carry them around forever) Lets see what next week brings.
      I would really like to see all my tumors gone on the next CT scan and have no more chemo but that is unlikely. I think Round 2 will suck just as equally as bad. They tell me I will go through another round of EOX before moving on. After that they will try a new drug that was recently certified by the FDA and has shown to work against gastric cancers. I don't know the name of it yet but will let you know. I talked with my oncologist about chemo brain, since I started work, and he said I should be mindful of it but that I shouldn't have a problem cause of my age. The side effects are still getting to me a little but I hope they subside more in the next week. My feet are a mess and the abdominal pain is getting to be an annoyance.
      Sorry if this post seems disorganized and confused. It is where I am at the moment. Maybe I will find some clarity in the next days. Until then I appreciate you for reading and as always leave a comment or shoot me an email.

Paradise

How goes it folks! I just spent the first three days of this week at the Reel Recovery trip in Paradise, UT. All I can say was that it was an absolute blast and I have so much to say its hard from getting all the words jumbled up. So I will just start at the beginning I guess. I left Monday afternoon. Turned my phone off cause I had no intention of answering it on the trip. I had no intention of listening to automated messages about infusion appointments, mail order pharmacy check ups, and bills from other hospitals. I am not gonna lie I wanted to get away from it all. So here I am driving a long and I go by a cop. Well let’s just say we had a nice conversation and I was on my way. Needless to say I was a little later than I expected. The night started out with all of us introducing ourselves and talking about our first cars. How awesome. Then we got into the serious stuff. We talked about our cancers. There was wide range of different diagnosis’, guys who were just starting treatment, folks near the end, and others who have lived with cancer for 30 years. Even though we had this connection we were strangers. There was a few people who I knew vicariously. One who shared the same doctor as me, another who I have seen at the clinic, and yet another who’s son was department head for the company I work for. What a small world. We had beautiful dinner of breaded trout and it was absolutely heavenly. Then we headed to the cabins for nights rest to start early at 7am.

            The next morning started off with breakfast of biscuits and gravy, eggs, and sausage. We talked about the plan of the day. We would go fishing come back for lunch and take a break during the heat of day and go out in the evening. That morning I went out with a 25 year old guy to a pond and learned how to cast on a fly rod.  There wee were fishing and talking about typical things like girls, college, parties, and so forth. And we were fishing. I love fishing and before my diagnosis I would go about 4 times a week. My goal this year was start fly fishing. So this was my first fishing trip this year and I learned how to fly fish. Needless to say we ended up only catching on rainbow trout that morning. We had lunch and most of the rest of the guys opted to go in for a cancer nap. I on the other hand wanted to go fishing and the medical officer on the trip went out with me. We headed to this spot and I landed about 7 fish. I also go my very first tiger trout right after mentioning I had never caught one. That evening I headed out with another volunteer and caught another three. The next morning I landed another three. All I can say was my shoulder was a little sore and it felt great. I had delicious ribeye steak the last night for dinner and the last breakfast was sweet potato pancakes and buttermilk syrup. All my photos have me smiling ear to ear with a huge toothy grin. I had a blast!

            One of main concerns through this whole cancer epic has been whether I could ever really feel fully carefree and happy without worrying about cancer. I learned on Tuesday I could for a day and half I fished laughed and smiled like was a child and driving home Wednesday afternoon I shed tears of joy because I thought I would never have that feeling again. It was a beautiful experience. The other guys I met on the retreat were great we shared stories of what we feared, what gave us hope, the pain, and how we will carry on. I can honestly say that I left with a family of brothers. The great thing about Reel Recovery is that they share the contact information for everyone involved with the retreat you attended so everyone can maintain contact, meet up, and maybe go fishing. That includes the volunteers. I can honestly say that it was one the happiest times of my life. It was fitting that it was in Paradise, UT because the retreat was truly Paradise and was at no cost to the participants thanks to the dedication of the volunteers and contributions from wonderful people and organizations. But I had to leave Paradise and continue my cancer epic.

            As I write this I am sitting  in infusion getting chemotherapy. Hopefully this will be the last infusion for a while anyways. My red blood cell counts have been as high as they ever have been. My whites and platelets are doing great as well. In two weeks I have a CT scan and that will determine my future. My doctor and I were talking about prognosis information and he told me as far as symptoms go I have responded better than most patients. I learned of a new FDA drug that was just approved for treating gastric cancers. We are looking at that. That CT scan will tell though. I start working again next week and I am both excited and nervous for it.
            Even though this was my last infusion I really did not want to come because I really dislike chemo. I hate feeling terrible. I usually recover pretty quick (most likely cause of my age) but I think it makes worse. Feeling like total sh*t then feeling great then like sh*t again. I was lucky my friend drove me here today. In about an hour that girl I mentioned last time will come and pick me up. Maybe we will go for coffee. I just can’t believe it is over finally. 

Be Well and Fish On!

-Just a dumb kid

 

Look at that huge smile and that beautiful Rainbow Trout!

One of the ponds in Paradise, full of hungry trout by the way.

"The Fault In Our Stars" plus other stuff

      Just to forewarn you, I have not actually seen the newest in romantic cinematic experiences to grace the big screens know as "The Fault In Our Stars". What I do know is that it involves two young adults with terminal caner and falling in love. The reason I am talking about it is that in the last three days I have heard about the movie on three separate occasions from folks who do not know about my diagnosis. I laugh because they tell me "it is a great movie because so many people are getting cancer these days." I have to laugh a little because they are telling someone who is Stage IV about this. Now I think any movie that tries to tell the tale of young adults suffering from cancer is an important one. If you look at the figures from the American Cancer Society they say 855,220 men and 810, 320 women will be diagnosed with cancer this year. That is a little over 1.6 million new cases. About 4.5% or 72,000 (stupidcancer.org) will be in young adults. As you can see not in the norm. So like I said it is nice to see some attention put on it and maybe ( I hope) the movie tells the story well enough that most people can see the troubles that we go through on a day to day basis or the fact that we put part of our life on hold for a little bit. Now a friend of mine who does know about my diagnosis suggested that I take this girl on date to see this movie. Now this lady is a very special person in my life. She has been to the doctor with me and is going on my last day of chemotherapy. In addition she meets up with me every couple weeks and we have been going for coffee. At the beginning when I was really fatigued and tired from not be able to eat she would bring her dogs over so at least I could play with them and of course we talked. About my diagnosis, terrible jokes, the future, how work was going, families, and just anything. My favorite thing though you ask? Towards the beginning of treatment I had a weird fascination with food since I couldn't eat and she had agreed that we would go to this fancy Sunday Brunch when I was done. Something to look forward too. Something she has a done a fantastic job of. I guess I could  go on and on. So my friend suggested I take her to see this movie. My thought was "ARE YOU KIDDING ME!" from what I understand this movie may be a little closer to life than lets say Transformers. So I am not sure if would take her to see that movie. Probably not because I don't think we need the troubles we are facing to be plastered in front of us on the big screen. But then again it might promote a good dialogue. Enough on that.
     My last post was kind part of a little freak out I had. I saw those numbers and well dang man they seem so overwhelming. It made me forget about things I was looking forward to and things I cared about and had me down. Remembering that I have nice brunch coming up, a nice little get together, and a fishing trip next week has got me in better spirits now. In addition I met with my boss this week and it looks like I will hopefully start work on the week of the 21st and hopefully be back full time the first week of August. The 17th is my last day of chemotherapy (for now anyways) and I will have another CT scan at the end of July. Hopefully these tumors are smaller than a golf ball by now.
      Things to look forward too are so important in times like these and help me get through those rough days. It has helped me realize what is important in my life. Maybe I need to do a better job of letting a certain someone know how important to me she is and how special she truly is. Sorry this post was half movie review of a movie I have never seen and romantic ramblings.

Until next time.

The Numbers Game

Whenever I tell people about my diagnosis and about life the question that seems to get asked frequently or people want to ask and don't is the "How long do you have?" What a question I think and and most of the time I just ask "How long do I have until (insert appropriately normal thing) I get dinner or go to the movies". The reason being is I want the people who are asking to actually say what they mean, especially when they think they are close enough to ask "How long do you have left to live?" The thing is whether you have cancer or not, you could die from a car accident or menagerie of random things. What people want to know is how cancer effects the longevity of your life. For me personally, I didn't want to know any of that information at the beginning. I was scared and the fact that I had to face my own mortality shook my 20 something sense of invincibility. The other thing was loads of people I knew told me you had to have a positive outlook on the diagnosis/life to help cure yourself. I found it hard with that thought in my head to look at the numbers. I did look at the numbers finally and instead of the impossible dread I feared would happen it seems like some more information. The numbers are broken down by 5 year survival rates (I got this information from the American Cancer Society website http://www.cancer.org/cancer/stomachcancer/detailedguide/stomach-cancer-survival-rates)
Stage IA - 71%
Stage IB - 57%
Stage IIA - 46%
Stage IIB - 33%
Stage IIIA - 20%
Stage IIIB - 14%
Stage IIIC - 9%
Stage IV - 4%

"The overall 5 year relative survival rate of all people with stomach cancer in the United States is about 29%."

Maybe this post seems morbid and maybe some aren't ready to look at it. The truth for the people diagnosed with this disease is that 3/10 people make it to the 5 year mark. For me 5 years from now would put me at 28. Now does that resign me to live sadly until then? Do I let go and party harder than ever before? Maybe a change of perspective is needed on the 5 year thing. 5 years is 260 weeks/1,826 days/43,830 hours/2,629,800 minutes/ 157,788,000 seconds. Time to ______. When I figure that I will let you know, but time to live extraordinary.

Thanks for reading.

Bloody Monday

So yesterday was a bloody Monday. Not only was it Monday but I had to spend approximately 6 hours having someone's blood pumped into my body. Might I say that it is not my most enjoyable experience (I may actually prefer chemo day to be honest) but a necessary one. I also had chemo day last Thursday so what a wonderful week. I actually didn't feel too badly after chemo but after yesterday I defiantly needed some time to recover. Other than playing vampire yesterday things seem to be going okay. I had coffee with some friends on Sunday. I just got back from a local cancer support group I started going to several weeks ago. I actually look forward to the group. Look forward to talking with the facilitators and hearing the stories of other patients and their caregivers. Sometimes you hear stories so similar to yours and helps you realize that there is a community out there, with similar struggles. I don't know sometimes I just feel  like a "dumb kid" and to be perfectly honest it is nice to feel that way. Not a lot to say I guess. Tomorrow I am going fishing and thats about it.

Peace.

Long Time

Sorry about the delay since my last posting. I was waiting on results from a CT scan I took after passing the half way point in my treatment. Then the hospital where I did my original CT scan took two weeks getting sent over to my oncologist. I was trying to pretend I didn't care but I was actually stressed about it. All I know so far is that the tumor has shrunk. That is what I have been told but hopefully I found out more next week! I started to attend a support group at another hospital in the area and spent a couple sessions being the only attendee and having some one on one with the facilitator. It has been nice talking with them about my past and trying to do a better job expressing my emotions and dealing with the fears that come from dealing with cancer especially at a young age. I am specifically referring to dealing with your own mortality. I never thought of myself as thinking I am invincible. Now though I realized I did. The main side effect of my treatment has been anemia (low red blood cells) and it leads to a shortness of breath and becoming fatigued easily. It robs me of the strength I used to have.

I always try to participate in community service events but I have never been on the receiving end. At my last treatment day a dog (sorry forgot to get a photo) from the local therapy animal came in and it was so nice to get to play with her for a bit. I also got to see how the rest of the patients reacted and how uplifted they were. In addition I will be participating in program called Reel Recovery in July. I will get to go fishing (a favorite activity of mine) meet other men affected by cancer and at no cost thanks to generous donors and volunteers. Meeting people who volunteer their time and energies renews some of my faith in a world that soft often seems overrun with all sorts of terrible. I hope to volunteer with these activities when my treatment is over. If you get a chance to I strongly encourage you to as well. The amount of hope I know I get from these fine people is awesome. There are those who tell you to be positive all the time and not get down, let me tell you what, CANCER SUCKS. The folks that say this obviously haven't had chemotherapy and all of the side effects it brings. It is impossible to be positive all the time, what is important is to be hopeful and live/love your life. It is okay for you to admit how crappy it is and sometimes get down as long as you don't stay down forever.  A quote I found recently helps me going during those low periods or I found myself asking "Why me" or "How do I deal with this in addition to all the other things in life".

        "Do not pray for easy lives. Pray to be stronger men" - John F. Kennedy


Other than that I just am trying to enjoy life. I went to Yoga class for the very first time and enjoyed it and will most likely will go back. I am also trying to spend time with friends and the folks who I consider part of my family. Both my roommates have moved out and it weird being in my house alone and have to pack my own stuff to move out which is kind of crazy right now since I  am dealing with cancer which is crazy.

Thanks for reading my rant. And again if you have questions or need someone to chat with shoot me an email.

No One Fights Alone

      Towards the beginning of my treatment I bought these wristbands. They are periwinkle and they say "No One Fights Alone". Periwinkle is the awareness color for those going through gastric and esophageal cancers (To be perfectly honest I didn't even know what periwinkle was until this). The reason I bought them was as a thank you for all those people who have been there supporting me and listening to my stories of living with cancer. Well as treatment wears on and I start feeling better physically but, it is starting to take its strain mentally and emotionally. I wear one everyday and when I start to feel really alone and like no one is there to help I look at it to remind myself that I really am not alone and there are plenty of people out there who care about me. If not then I just need to look at my phone to see the various text messages, phone calls, etc... to prove myself wrong. 

     Some of you know exactly what I am talking about. But this disease is doesn't finish up quickly like the cold or flu and the medication you take has some serious side effects. The way I describe it is " imagine you got in fight with about four people and seriously beat your a**". Typically your cold medicine doesn't do that. In addition you go through this treatment and you may never get rid of it entirely. So you have to get used to this idea that there will be a "new normal" in life and you have to believe that it will be better than what you had before. Relationships will change, some will grow stronger and others will fade away. For better or for worse. Some will surprise you with the amount of support will give and others will disappoint you when they start to fade away. Now I know they have to learn how to accept my condition in their own way or they don't know how. To be perfectly honest I  have a lot going on and trying to help them figure it out for themselves is difficult. But enough of that rant.

     The best part is when I see those care about wearing those wristbands. I didn't realize how much it meant when I see them and I know that they do care and are thinking about me. It also helps going through text messages and reading words of encouragement from those close too me. Sometimes they can bring out some pretty strong emotions, but it is defiantly nice to see. I can defiantly say that I appreciate all of those people in my family (not the blood kind), who have listened to me rant about life with cancer, been to treatments with me, driven with me to doctors appointments, gone grocery shopping, and for not treating me like I have one foot in the grave. I am gonna live with cancer and not let cancer run my life.

Until next time!

 

Just Need To Vent

It has been almost 3 months since I was diagnosed with Stage IV Gastric-Esophageal Cancer and I will not lie I am defiantly getting sick of dealing with it. Physically I am getting better but I can feel the fight wearing on me for sure. It is defiantly a new experience for me. So many things to deal with in addition to all the normal life stuff. I worry about my future, relationships, and what I am gonna do in general. Right now I am just trying to enjoy each day as it comes.