Check it out, I am Radioactive again.
For those of you who follow my story, you might remember this is not this first time I've become radioactive but this time they gave me a cool card. This is so if I happen to set off a Geiger Counter (seriously). I totally want to go somewhere and set off a geiger counter. The key is in the timing, you have to say "What is that green ooze?" right before the alarm sounds. Where does a man have to go to set off a radiation leak alarm???
When I was going through treatment, the one place I would go when I had days off was Torrey Pines State Reserve and either walk the shore or hike to the edge of one of the cliffs. For my birthday today I decide to take my girls there and show them where their Dad would try and find his center.
Man March 1st already. Where does the time fly? Its been a long time since my last post and even longer since Ive talked about my cancer. Its not that Ive been avoiding the conversation, just hasnt been much to say. I do have a couple of updates now, nothing bad, just general updates.
So, if you recall one of my follow up treatments for the next several years is to have a CAT Scan and blood work done routinely every 3 months. The CT is not one of my favorite tests since they hook me up to this IV and pump something into me during the Scan. But hey, if that is the worse of it, I'm happy. Anyways, the first one was a big deal because it was the first time my body would have been normalized in months and the first opportunity to tell if chemo got all the cancer. I ended up doing that test at the beginning of January and everything came back normal; great news for me.
My oncologist introduced me to another of his patients, Paul, who was also diagnosed with testicular cancer only on a much more Lance Armstrong level than I. He actually has been back to a somewhat normal life for about 2 years I think. So weve been getting together for a beer about once a month and the good doctor has even joined us once. I asked the Good Doctor if I was in fact cured and the way he explained was that I am considered in remission for now. If I go the 3 (or so years) without the cancer coming back, then they kind of start saying I am cancer free. As an Oncologist, he rarely ever uses the term cured but from a more general public understanding I would be considered that.
I started playing baseball again which was a huge personal achievement for me. I do love playing baseball. Its still taking a lot of out me but Ive felt that had been happening more and more gradually over the years anyways. Probably has more to do with age than anything else. The girls and I have taken to walking to a local park pretty much every weekend which has been fun. Usually my sister, Theta, and I walk them there. I have taken to bringing a basketball with me and shooting around with her while the girls did their thing. It has been forever since I had picked up a basketball so that has been a lot of fun and one day I actually plan on getting good enough to beat my sister.
Thats about it for now. Take it easy.
Continue reading Cancer- Gone but not Forgotten
Well on Monday it is. Thats right, for all those who have been following my progress online; my derailed life has jumped back on track. I have been very low key the past several weeks not posting since chemo ended because I didnt want to jinx things. Thank my lucky stars I'm not superstitious, knock on wood, but I had my tests last week and got the results this week. All my numbers look good and no new tumors, so I am released to return to work, which I will do on Monday.
Honestly, I dont know for sure if this means I am cancer free or just in remission but I do know I feel great, better than I have in months, and I am looking forward to getting back into shape. Although, I guess round is considered a shape.
Thats right I am done, at least for now. Finished my last treatment of my last cycle today. I wish that was it, I wish there was a switch that I got to flick that now made me better, but the truth of the matter is this last cycle has taken a lot out of me; one of my excuses for not posting anything in such a long time. But I am done with the treatment so now my body has as much time as it needs to bounce back, and trust me it has a lot of bouncing it needs to do. I see my doctor next week; I am really hoping I dont have to get jabbed with a needle but I am guessing there will be blood work involved, then its on to the scans and tests to make sure everyone is happy with the results. I am very happy I am done with treatment but its a very cautious type of joy. I need to hear the doctor say, Looking at the results we are good for now. I did learn that part of my life for the next 4 to 5 years will getting a CT scan of my chest, abdomen and pelvis every 3 months; which kind of sucks because they poke me and pump this chemical inside me that gives you the sensation that you are peeing yourself, a very weird feeling. But that is better than chemo so Im not going to complain; I can live with a poke every 3 months if I have to.
During my last treatment there was a lot of real talk about what happens if the cancer comes back and how it is common and it can still be beaten. It was something I didnt want to hear or think about but knew it had to be said. Honestly, this cancer is not something I can just put out of my mind. Its pretty much been my only focus for the past several months. The thought of it coming back is something I need to mentally prepare for and I honestly dont know how to do that right now. I assume it will come to me and I will learn how to deal with it just like Ive learned to deal with a lot of things I didnt think I would have to worry about, at least not at this age. Right now I am looking forward to dropping cancer down a few priorities in my life and having other things to deal with.
Thanks again to everyone who has stuck by my side and my familys while we went through this. I will never be able to repay the love and affection that was showered upon us; it will never be forgotten. The posts are going to slow down, I will let everyone know the results from all my tests to really put some closure on this. When I get running full steam again, I might start posting general crap again like I did before and will try to keep including helpful geek tips to all my friends and family.
Thanks again for being here for me.
Well, I started my 3rd and final cycle of chemo today and we are in the home stretch. I am on my full week this week, which means everyday for 5 days then its only a matter of 2 more quick treatments and I am done, hopefully. There will probably be some more testing when all the treatments are done to figure out if I am indeed good for now but I have no reason to think I wont be. My blood work came back good today and everything is low but thats to be expected. I am really getting excited about moving back to normal everyday life. I miss my friends, I miss playing baseball, I miss playing with Emily and Alyssa, I miss work (if you can believe it), I miss feeling good, and I miss my hair, what little I had. Im looking forward to missing the doctors and nurses (as wonderful as they are) and more importantly I am really looking forward to not getting jabbed by a needle every couple of days. I am trying not to get too far ahead of myself; there is still a lot that needs to get done but damn, I cant help but think about normal life again. I hope posting my progress here has helped everyone keep up to date about how I am doing but I am looking forward to not talking about it every day.
Continue reading 15 down 6 to go
In the morning, fever all through the night! You know how the song goes, and that's what landed me back in the hospital. No, not my singing but a fever. In all honesty, I was probably no sicker than your normal person with the flu but because of my condition, red flags went flying up all over the place. I had been feeling bad and getting progressively worse everyday starting about a week ago. Then Saturday night I got a fever and the chills. Funny how you get those two things together, physically you body temp is too high but you feel like you are freezing. Bek called the doc, the doc sent me to the emergency room, and that was all they wrote.
I tell ya, the one thing I can't complain about is the level of care I am getting. At every turn the Scripts Health Care System and all the doctors seem to really go above and beyond to make sure they are covering all the bases with me and giving me the best care there is. Now again, if I didn't have cancer, I'm sure it would have been one of those normal situations where they would have given me some antibiotics, and told me to drink plenty of fluids and get lots of rest; but I do have cancer and these guys where pretty hell bent on figuring out what was causing the fever. I ended up staying in the hospital Saturday night and Sunday night, getting x-rayed, CAT scanned (twice), and having an entire battery of tests. Although, I still can't figure out why 4:30 AM seems to be the best time of day to weigh me and draw blood; that just seems mean. It took a lot of talking to finally convince them to let me go home late Monday. They never really figured out conclusively what was causing the fever, but since I had a normal temperature all day Monday and didn't get the chills, they decided I could go home.
Not only did they let me come home but they also let me stay on schedule with my chemo treatments instead of delaying them. This is real nice being how I am so close to done. I would hate to have to tack on another week to that. So I am feeling better and we are back on track with treatment.
One more treatment and Im finished with Cycle2 and moving on to Cycle3 and hopefully my final Cycle. Heard a lot of the phrase cumulative effects this past week. My full week hit me a little harder than Cycle1 and over the weekend I was probably physically lower feeling than I have been since my actual surgeries. Hair loss is fun and spreading 🙂 and I have a lovely rash that now makes it so I dont only feel like a sick heroin addict but I kind of look like one too. Its a nice rounded look. Bruises, punctures, and red little dots litter my arm which struggles to hold on it its hair. One little fact that is always fun to show people is how the chemo burns the blood vessels and leaves the dull browns streaks on my arm. Hey, I told you guys I would be honest and let you know what I was going through, for better or worse.
Today was a better day although I did have to get my nasty treatment today and that usually hits me the next day or so. Besides that everything is moving along. As nice as it was to have a free week a couple of weeks ago, I really want to get into Cycle3 and get it done. So lets hope there is nothing to slow down that process.
My Dad is doing much better. He got his staples out and is moving around more, which is great to hear. Beks Dad in Alabama is still OK. Which was nice to hear. Besides that everything is moving on. Girls are doing great in school and enjoying their new teachers.
Oh and one more thing, turns out one of my nieces decided to tie the knot. Kristine got married to a young gentleman today and she is now Kristine Harvard. I felt bad her Mom (my sister) was out here taking care of me while this was happening but I guess it couldnt be avoided. You know young people when they are in love there is no reasoning with them. I believe the ceremony was a simple Justice of the Peace type of thing with a full wedding to follow.
Not much to talk about really just wanted to let everyone know how its going. It's mid-week and the long chemo days are starting to wear on me. But this is typical. I was feeling so good over this past weekend but I knew it couldn't last.
My Dad seems to be doing well. Healing can be a long process. Bek's Dad seems to have dodged the major wrath of the latest hurricane down in the south. He said there was a lot of wind but everything held together. Happy to hear that.
Thanks for all the emails and keep them coming. There is nothing nice than coming home from a day of chemo and reading emails or comments on the website, it is a real pick me up.
OK I started the second cycle of chemo today and I have a tube sticking out of my arm once again. Once again it sucks. But let's take you back a little to last Friday. My Dad made it home from the hospital and is doing well. He is having some issues with adjusting to the handicapped role and always feeling bad and not being able too do much but I promised him that if he took care of himself it would all get better really quick. Also on Friday I made an appearance at my work and that was something I really needed to do. Didn't realize how much I needed it until I showed up and started seeing people. I felt kind of bad because people where thinking I was done and back to work and I had to tell them not yet but I was working on it. Understand, I hadn't had any chemo since early the previous week and with the exception of the 12-hour round trip I to Phoenix to see my Dad, I was feeling physically great. Had some minor muscle soreness from my surgery but not chemo related. I was fatigued while I was out there but that was easy enough to take care of with sleep. By Friday, Saturday and Sunday I was feeling really, really good. I even took a meeting with the Baseball League Saturday and caught my old team playing a practice game on Sunday. Honestly, by Sunday it took all the common sense I could think of not to grab my uniform and try to get in a couple of innings with a couple at bats. I didn't, but I felt like I could have. Much like heading into work on Friday, it was great to see a lot of guys I haven't seen in a long time on the baseball field.
School is going great for the PowerPuff twins as my friend in Atlanta likes to call them. One of the girls is getting very tired about her walk across campus but I think she'll get used to it.
Heard an interesting story about my wife's brother. Seems like he was bit by an alligator in North Carolina. I guess he didn't taste too good because he only ended up with a couple of small puncture holes in his foot. But the big concern now is Bek's Dad and Step Mother in Alabama. As I type this email a rather nasty hurricane is headed their way.
I do have a strong recommendation to my other family members who have seem to avoided the various series of unfortunate events such as cancer, aneurysm, blown out knees, animal attacks, or deadly take-your-ass-out-of-Kansas weather. My advice to those of you who are left: RUN, HIDE, BREAD, MILK, and TOILET PAPER, and lock yourselves in a cellar somewhere. Obviously one of us pissed God off and he is trying to get rid of us in his cute "I act in mysterious ways". My ass, I'll bring him up on charges. If you happen to have built an ARK it might be a good time to jump on it and row far, far away. After 40 days and 40 nights if any of us are still around we will get word to you I promise.
OK, obviously my medication is kicking in and I should probably go lay down for awhile. Thanks for listening to the rant. I'm sure there will be more to come.
Well, saw the doctor today and my blood work is looking much, much better. This means I resume my chemo next week with my full week of treatment. It sucks, but means at the end if the week I will only have one more full week to get through.
The girls started school today and love their respective classes. They are separated this year and are, in fact, completely across campus from each other. They each have enough familiar faces in their classes to make them happy.
Talked to my Dad today and he is sounding great. He was really itching for my Mom to show up so he could go for a walk outside. I really hope it wasn't to smoke a cigarette but I know it probably was. Anyway, to hear him talk it was sounding pretty promising that they might be sending him home this weekend. It was a real bullet he dodged, but all he has to do now is recover.
That's about it for now.
First off, SORRY SORRY SORRY for the lack of updates. I have to be honest, I was really happy to finish cycle 1 back on the 16th and didn't want to think about starting cycle 2. As life would have it there were some more curve balls thrown my way. First off, I went to chemo to begin my second cycle when there was a problem. My blood work wasn't showing me bouncing back as quickly as I should have. Although my counts were up from the previous week, the doctor decided they were still too low to risk another full week of chemo. I couldn't help it, I was happy. I knew this only meant a delay in treatment but any week without chemo is a good week for me, or so I thought.
So we get home from the doctors office on Monday and I am relaxing when we get a phone call from my mother in Arizona. She informs Rebekah that my Dad was going into emergency surgery; they had found a Abdominal Aneurysm and it was leaking. An hour later, my sister and I are driving east towards a hospital in Arizona. By the time we got there 6 hours later, Dad was out of surgery and in ICU. I have never seen my Dad laid up like that before but considering everything he just went through and how close he was to actually dying, he looked great. He actually woke up while we were there and gave us a hard time about coming out, so we knew he was going to be OK. Gave him a kiss goodnight and headed to their house. On Tuesday we spent a good time at the hospital although personally I wasn't having one of my better days and ended up going back to the house and sleeping a lot. But again, Dad was looking good. Today, he was up and moving around and looking great. They were transferring him out of ICU and into a normal room and removing some of his tubes. So, Theta and I headed back to San Diego. I have a doctor's appointment to see where I am and what we are going to do about my treatment tomorrow and my big girls start the 2nd grade tomorrow.
So, more updates to come I promise.
Well, I know I technically missed a week but that is actually a good thing. I like to think I missed a week of updating the website because I had better things to do. That's not really true, it has more to do with being lazy, but mentally it's nicer to think I was so tied up doing other things besides chemo that I didn't get a chance to sit at the computer and do any work. But again, it had more to do with laziness and honestly, not having that much to report. Which is pretty much where we are still today.
OK, chemo update. I just came home from finishing up my third week which completes cycle 1. Next week it's back to 5 days a week, 6 hours a day of chemo. I officially started showing some side effects from the chemo. I am loosing hair and fast, time for a fresh shave of the head because things are getting patchy. I have the huge rash, which I guess it typically for chemo. And the weird one, which is also typical I might add, is that the chemo is starting to "burn" my veins; basically leaving these stripes on my hand and up my arm tracing the vein where the chemo is being injected. My blood work from today wasn't as good as I had hoped it to be but still "to be expected". My white blood cells are down very low and with the girls starting school next week this means a lot of hand washing in the Johnson household for a while. As for now, I am mentally working on preparing myself for cycle 2 and another full week of chemo, which just doesn't appeal to me right now all.
Like I mentioned earlier, the girls are going to be starting the 2nd grade next week and they are excited. They are going to be in separate classes this year and they seem happy about this. The girls had a fun packed week last week with two fun sleepovers at other people's houses. Bek, Theta, and myself actually went out and enjoyed a "grown up" night out with a little casual dinner and then Bek and Theta hooked up with another friend and took in a movie. Myself, I've taken up walking, and walking a lot. I've been trying to take advantage to the diversity of San Diego by hiking mountain terrain as well as long strolls along the many beaches.
Well, we made it through the first week of chemo and it was, well what it was. It was a long and uncomfortable week. All and all I am feeling better than I had anticipated. I don't feel great and it's strange because I can tell there is "something wrong" inside of me because things just "don't feel right". But all in all I am doing OK. I do hit some lows as well as have my better moments. Not sure what to update everyone on. Things are, as you can imagine, day by day.
We've completed our first "full week" of treatment where I was required to be there everyday for about 6 hours and get a bunch of different cocktails pumped into me. For the next two weeks, I only need to go in on Tuesdays for a treatment of Bleomycin. Besides that, the only other goal is to get my body back in shape so that it can go through another "full week" of treatment.
With the exception of not feeling well I don't think I am really displaying too many of the normal side effects. Those of you who have checked out the webcam might have noticed the clean-shaven head. That was for the most part self-inflicted to avoid the patchy look. I have noticed that I don't need to shave nearly as much as I used to but at the same time I still have my eyebrows so things aren't just falling out.
My goal this week is to get out and get active with something. Not sure what and it's not like I really feel like doing anything, but I need to take this time to get my body moving again. It's been a month since my first big surgery that cut through all my stomach muscles so I think it's time I start doing some activities that build that back up. Before I started chemo, and not knowing how I was going to respond to chemo, I talked my good friend Terry into taking me to the batting cages and letting me hit a few baseballs. That probably wasn't the smartest move to make and I ended up paying for it over the next couple of days but I was glad I did it. I think I am going to give the batting cages a break for a little while but maybe I'll try and hit the driving range and see if that is any easier.
As far as the family report everything seems to be going good. The girls are having a full and complete summer vacation. Their Aunt Theta is still here and is a great help. Bek is doing well; she is working a lot and taking care of me so things are crazy for her. My parents are talking about coming back out which would be really nice.
So I am sitting here for my second day of chemo and it is about as exciting as the first day. I have to really thank my friends at Sony for hooking me up with a new PlayStation Portable (PSP). I lovc this thing. It plays games, videos, and music as well as hold pictures. I need to go out and buy some movies for this thing or get a bigger memory card so I can put my own movies on it. Besides that not much more going on. I sit here for about 5 hours and have a bunch of toxic chemicals pumped into me. Really looking forward to being done with this. Getting back to work, seeing my old friends, playing baseball.
Anyways, I wish I had more to talk about. Actually getting tired of talking about cancer and my treatment. Everyone here is sick with one thing or another and they can't wait to talk about it. Today I think I might be the only cancer person here and don't really feel like sharing it with people. I am the youngest so far over the past couple of days. As odd as it sounds I take a certain joy in that. I know younger people get affected but being 36 and the youngest one being treated seems like a good sign on some level.
Today there are a bunch of people getting blood transfusions here today. I am curious about what their connections are. Bek and I have ongoing discussions about blood transfusions. Because of her faith she doesn't agree with it and I disagree with that. For Bek, a lot of it comes down to bibilical scripture and how her faith interprets it. Fortunately, chemo wasn't around when the Bible was written or I'm sure that would have been a mortal sin, in my opinion. The thought of having faith dictate medical decicions always kind of turned me off to a lot of faiths and there are many that do it in some form or another. And they can all point out cases where people followed their faith and their decisions on various issues turned out for the better. You can argue that they are the exception not the rule and point out several cases in which results weren't so positive, but those conversations go nowhere.
Honestly, when word of cancer first started being used in my case, I told Bek chemo was out of the question. Obviously, that was a premature statement but my experience at the time had been chemo being used to attempt to save people whose cancer had gotten very far along; people whose outlook was bleak but still they hoped that chemo could extend or resolve the problem. In just about every case, a part of the chemo extended life for a little while but the quality of life was terrible. I didn't want to be that person. But we talked to my Oncologist and we made the determination we were not "chasing" anything anymore. All the tumors are removed; now we just need to try and finish off the cancer in my blood stream. After a lot of soul searching I decided that I would do the chemo and I know when I am at my girls high school graduation I will be happy that I did.
As I sit here and watch these people receive their blood transfusions I wonder what their obstacles were when determining this treatment. I wonder if faith factored in, or a need to be here for someone, or just a desire to live. From the looks of everyone here it looks these guys have made the best decision, they all seem very well.