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.
Chemo started today, or as we refer to it Cycle1 (of 3) and went fairly well. No blood gushing out of my eye sockets or visions of the Reaper rising out of the ground to take me away. No, for the most part it was pretty boring. Got to meet the nurse who will be administering my treatment. She seems pretty nice, always making sure I am comfortable and have the things I need.
The two big drugs I got today were Etoposide and Cisplation. Basically Etoposide kills off cells, mainly cancer cells but also good cells unfortunately. The idea is that the good cells will regenerate themselves in about a month. This has become one of the weekly numbers we will be keeping our eyes on. Cisplation slows down the growth of any new cancer cells while this is all going on.
Tomorrow I get another drug added to my cocktail called Bleomycin. This is the bad boy of the three and has the potential of doing the most harm to my system. It jacks with your lungs pretty good and can cause skin rashes and mouth sores. They all have the issues of making you sick and loosing your hair.
This goes on everyday this week. Then the next 2 weeks I have my cocktail on Tuesday and that completes a Cycle. I then start the process all over again. The Bleomycin is given only on the Tuesdays and the other two drugs are only administered the first week of the cycle. They're also giving me a pre-chemo cocktail each morning that really cuts down the side effects such as nausea and keeps me hydrated.
That's about it for today. Only other real thing of concern, just to keep everyone informed, was some talk about my kidneys having problems. These cycles really put your body through the wringer and some numbers came back that my kidney functions are low. Right now, it's just a matter of making sure I drink a lot of water and other fluids and they feel everything will be Ok.
Stage IIc to be exact. That is the stage of my cancer. Understand there are several stages and sub-stages. Stage I (A, B, and S) which is the least severe cancer stage, Stage II (A, B, and C), and the more severe, Stage III (A, B, and C). Stage IIC is defined as a lymph node mass in abdomen or pelvis more than 5 cm (2 inches) in size; tumor markers are normal or mildly increased. Because I am a little more on the advanced stage side with a StageIIC, not doing chemo really isn't an option.
Now the good news, Testicular Cancer is very aggressive and quickly attacks the lungs and brain but I fortunately avoided that. My chest x-rays came back clean and since there is nothing there, there is no reason to suspect I have any tumors on my brain. This is great news and means that I am done with surgery.
So I start my chemo treatment called BEP next Monday. Thanks to several advancements in the various medications the procedure should be an outpatient process. Unless my body has a severe adverse reaction to the treatment, I should be able to come home everyday after my treatments, which will be nice.
As always thanks for the emails, postings, and to the several people helping out my family. I will continue to keep updates coming when I can.
Hey everyone, just dropping a quick note to let you know I am still here. Had a pretty rough patch last week but I am feeling better and better everyday now. I still hurt, but in retrospect over the past month, I am doing great. Wouldn't want to hurt this much any other time, but today I am happy to feel this way and I know tomorrow I will feel even better. A lot of small personal accomplishments have happened the past several days, the biggest of which was me actually getting outside and moving around a little. It has been weeks since I've been outside for any amount of time and it felt good to go for a walk. I am moving around more and more. I actually helped my daughters wash their hair last night which became a huge personal moment for me. I am looking forward to getting back to everyday life although that might still be a little ways out.
So let's do the update thing. I had a follow up visit with the doctor that did my first surgery and he checked me out to see how my body was healing after the two surgeries. Things seem to be pretty much on track. He was concerned I was still not eating and asked that I make more of an effort to eat normal which I have started doing. The big appointment is Tuesday, when I see my Oncologist. He is the person who has taken the lead in my ongoing treatment. Of which, I should have more information on after my visit with the Oncologist but for now, it looks like I am going to have to go through a chemo process known as BEP for 4 cycles. From everything I've heard this is pretty much going to suck but it should be the end of the process for me; after that, things should start getting back to normal, health and life wise.
Now for some fun stuff, since I was feeling good I decided to sit down at the computer and do some work, so I added a webcam to the site. Nothing special, just pretty much me looking dazed and confused at my computer when I am in here working. So be sure to check it out if you are interested, it updates about every 5 minutes when it is on.
Sorry I didn't update the site yesterday but to be honest, physically I am hurting pretty good right now. My surgery to remove the new mass went as well as expected. I am a man who considers himself "up with technology" but the ability for a doctor to pull me in for surgery, cut me open, remove body parts, close me up and have me home for lunch is simply amazing. It takes me longer to fix most computer problems then it took this doctor to perform his surgery on my body. I couldn’t believe that I was home in less than 6 hours. They checked me in, prepped me, knocked me out, cut me open, did the surgery, closed me up, woke me up, and sent me home in less time then a day of work.
Yesterday and today I have been hurting, and I mean hurting, a lot. Today has been one of the toughest days, physically, for me. Personally, I have been in more pain these last couple of weeks but especially yesterday and today than I ever care to be in. Today went well beyond discomfort; it out and out hurt, and hurt bad.
I’ve taken a lot of time to make sure I thank every one helping out my family in this time and there are quite a few people lending their hand from dinners to helping out around the house. But a couple of people who I might not have given the just desserts are my wife, Rebekah and my sister, Theta. I don’t know what I would have done this morning if my sister wasn’t here. She has been helping out with the girls when Bek has been working and running around; basically keeping our world spinning. Theta also has been looking after me and I really needed her today. I will never be able to completely let her know how much she is appreciated. And then there’s Rebekah. Like I said she has been doing everything to try so hard to keep things as normal as possible. She’s been working and then coming home, taking care of me, getting normal errands done, and still managing to spend time with the girls. And the girls themselves, Emily and Alyssa, have been absolutely wonderful. Although we are trying to shield them from a lot of the things going on they are smart kids and know there is more to the situation than they are being told. So much of our life lately has been “out of the normal” routine and the girls have been great about it. From staying with friends, to respecting an Aunt they hardly knew, to not being able to jump up and down on Dad they way they normally do, the girls have been great and continue to be wonderful. Bek and Theta are working so hard to make sure they have a normal summer vacation.
Continue reading Everything went well
Well, got some bad news today. Turns out I am going to have some more surgery to remove another "suspicious" mass on Thursday. This is will be nothing like the original tumor that was removed. As a matter of fact, right now it sounds like it's going to be out patient surgery where I go in early in the morning and get discharged later that same day. I will know more tomorrow after I talk to the doctor doing the surgery.
As always a huge thanks goes out to all the family and friends who have been so supportive over this very difficult time. Even the emails and comments posted on the website make for a huge lift in my spirits when I read them.
Sorry it's taken me awhile to post to the site. Physically, the surgery to remove the original tumor has taken a lot out of me. I've been hurting pretty good this past week since coming home from the hospital but man it feels so good to be home.
Moving forward, it looks like this next surgery is going to be it; at least we are hoping. I will get a two week period to recover and after that start a 4 month treat process of chemo. At least that is the plan for now.
Well, I'm back home and I couldn't be happier. Humm, I guess that's not totally true. Let me apologize for the confusion and emotional up and down roller coaster ride of the past week. We were simply relaying information as we got it.
To make sure we are all on the same page, let me break down the various diagnoses of the past couple of weeks.
Going into my surgery last Friday, the diagnosis was that I had a very rare cancer called Sarcoma. This sucked but was very treatable. The key thing was getting the tumor itself out of my body in one complete piece. This was the best diagnosis with the test results and small biopsy that they had. If the tumor was taken out completely then I was going to have to move on to radiation treatment and the lovely plastic pants but after that I would be done and hopefully cancer free.
After a very long surgery on Friday, the lead surgeon who specialized in Sarcoma Tumors told us that he was confident it was not a Sarcoma Tumor but was in fact this "Mediastinal teratoma" that Bek posted about earlier. As far as additional treatment, there was none; the surgery was it, I was done after that. No cancer at all. Just needed to heal from that and I was back in the game. Now understand, the surgeon wasn't shooting from the hip to make a family happy, as I mentioned earlier there were several “lead” surgeons in for this operation and they all shared in the findings. As a matter of fact a few of the surgeons and other doctors whom I had been seeing over the past few weeks were happy to drop by and share how relieved they were to find the teratoma and how it must have be a huge weight of my shoulder.
The tumor itself was sent off to Pathology just to make the findings “official” and the only other thing there was to focus one was my recovery.
Then yesterday, the doctor made his normal stop off at my room as he had been doing all week but this time he pulled up a chair and sat down; I knew there was a problem. He started off with an apology; this wasn't going to be good. He explained how they had been running multiple tests on the tumor and discovered it was in fact a Yolk Sac Tumor and that I was back to having cancer only this time it wasn't as easy of a cancer to treat and cure. Matter of fact, there will not be a way to tell if I am ever completely cancer free.
Unfortunately, the Lead Surgeon who performed the operation and had been checking up on me everyday, chose to defer any cancer questions we had to our Oncologist. On the one hand this really concerns me and on the other hand I can totally understand this. So we find ourselves in a familiar position of not really having enough information to relay any type of full details to everyone. For now I am just happy to be back home and with all the women in my life. I am pretty tired right now so I will post more information of what we do know over the next couple of days. I would also like to thank all the people who have taken the time to post comments, emails, phone calls, and drop by; especially my sister, who flew out here from the east coast last week and has been helping out a lot. Thank you also to all the friends who have been helping out by watching the girls as Bek and I ran to different multiple doctor appointments, and supplying wonderful dinners to help lighten our very hectic schedules. It is really comforting to know how many caring people we have out there thinking and praying for us. Thank you again for all the support you are providing.
Well, more news. It looks like the surgeon was mistaken in his optimism. The pathology report today indicates that Eric indeed has cancer, yolk sac tumor to be specific. They are sending additional specimens to a national lab but that's the diagnosis so far. Of course, I've spent too much time on the internet trying to find answers but it's all relative.
Here's one website: http://lpch.org/DiseaseHealthInfo/HealthLibrary/oncology/gct.html
endodermal sinus tumor or yolk sac tumors
Endodermal sinus tumor or yolk sac tumors are germ cell tumors that are most often malignant, but may also be benign. These tumors are most commonly found in the ovary, testes, and sacrococcygeal areas (tail bone, or distal end of spinal column). When found in the ovaries and testes, they are often very aggressive, malignant, and can spread rapidly through the lymphatic system and other organs in the body. Yolk sac tumors are the most common malignant testicular and ovarian tumors in children. Most yolk sac tumors will require surgery and chemotherapy, regardless of stage or presence of metastasis, because of the aggressive nature and recurrence of the disease
At this point, Eric will be discharged tomorrow and is scheduled to see the Oncologist Thursday, July 14. The surgeon says chemotherapy may be recommended but again, it's all a waiting game at this point. Wish I had better news to report. Who knows, maybe they'll be wrong again. It wouldn't be the first time during the last month of doctor's appointments and tests.
Keep saying those prayers! We do appreciate all of you.
Well, I can finally update the website myself. Eric was coherent enough to harass today about the computer and we have internet connection again! Tom and Terry were kind enough to update the web and email so that you weren't left in the dark too long.
So, here's the latest. They moved him to a med/surg room this afternoon and he's up walking around a little. It's going to be a long summer but his doctor is optimistic that the worst is over. The tumor is out and Eric's vein started filling up immediately; no damage was done to it while the tumor was pressing up against it all this time. From all appearances it is in fact NOT cancer but an even rarer anomaly, a teratoma.
Mature teratomas of the mediastinum are benign lesions. They do not have the metastatic potential observed in testicular teratoma and are cured by surgical resection alone. Because of their anatomic location, intraoperative and postoperative complications are the only significant source of morbidity, as other intrathoracic structures often are intimately involved with the tumor.
Sex: Sacrococcygeal teratomas are much more common in females than in males, occurring in a female-to-male ratio of approximately 3-4:1. Most sources report no sex predilection for mediastinal teratomas. Others document a marked male or marked female predominance. Excluding testicular teratomas, 75-80% of teratomas occur in girls.
Also, to paraphase another oncologist, they can be comprised of all sorts of cells, such as hair, teeth, skin, intestines. He said it's not surprising to actually find teeth, hair, intestines within the tumor!?! (anyone familiar with My Big Fat Greek Wedding will appreciate this). Leave it to Eric to be as unique as possible!!! Of course, we won't have the official word until Tuesday/Wednesday next week but I plan on riding this wave as long as I can 🙂
Thank you, thank you for all of your kind thoughts and prayers and especially all of your help. We couldn't have made it this far without you.
Bek, Eric, Emme and Ally
PS: Anyone looking to visit should probably call first but he may be up to it as soon as tomorrow afternoon. He's in room 413 (4-West) at Scripps Green in La Jolla. Their main number is 858-554-9100. We still don't know for sure when he'll be home but it'll probably be sometime between Wednesday and Friday.
Family and friends, good news. The 4 hour surgery was successful in removing a benign tumor just slightly larger then a baseball. NO cancer was found! He is expected to make a full recovery! Thanks to all for their thoughts and prayers.