Cancer - Richie's Blog

After I spoke to someone that had kept up with me for a long time and my entries stopped, they wondered if I had died. Ummm. no. I am sorry that I did stop and am glad to be journaling again. I am a Triple Cancer Survivor. 1975, 2005 and 2009. Although I am not truly considered a survivor of the recurrence I had in 2009 because it hasn't been 5 years yet. But I do. I haven't been able to get back to my nice weight I was at when all this started, but I do feel good and as of my last MRI about a month ago, I am cancer free. Let's hope it stays that way. I really do owe my life to Chad after he saved me that initial night in Jan, 2005 when I had a seizure and he called 911. He took care of me all those many months on chemo when I was so sick. And then after getting me through all that, he was there for me in 2009 when it came back. It's been over 11 years we have been together and if all that we have been through hasn't driven us apart, I just can't imagine what could. He is my guardian angel. I will start posting about every 6 months when I have MRIs to report that I am clear.

just got out of surgery. Dr. Pollack said the surgery went very, very well. It looks like the tumor has not spread to the surrounding brain area. Now the tumor goes to the pathologist which will take 7-10 days to get results. Richie will be in the neurosurgery ICU for 24 hours and should be in the hospital a day or two afterwards.

August 4 at 6:01pm
Richie Johnsonis in the neurosurgery ICU. He has been having some pain. I knew he was okay when the first thing out of his mouth after surgery to me (Chad) was "Who are you?" They didn't manage to take out his sense of humor.

August 5 at 10:12am
Richie Johnson well here I am... I'm back and alive. hehe. thanks Chad for making updates for me. Apparently there was a tape nazi in the OR as I had all my little tubes taped completely down both arms.. it tooks a nurse over 30 minutes to get that mess off... at 3:30 this morning. not fun to wake up to.. but they needed to remove it so they could fix some of the lines that were tangled and one of the ports didn't work.

August 6 at 12:34pm
Richie Johnson discharge is scheduled for 2pm today, 48 hours after surgery.

August 7 at 5:28pm
Richie Johnson

Got home yesterday from hospital and I am doing good. Get dizzy quite a bit and have a consistant headache of course that I was told medicine won't help. Good to be home. Mom and Chad are taking care of me. Got 16 staples in my head and some... stitches where the stabilizer bars were to keep my head from moving during surgery.

August 9 at 12:01pm
Richie Johnson

is sad because Chad left today till Friday for training for work. He just left at 10:30 and I already really miss him. And my Mom leaves tomorrow to go back home. It's been great to have her here with me during this mess. My friend Marcie gets... here this afternoon and she will be staying with me this week while Chad is away. She has been an amazing friend to me for many years.

August 10 at 10:18am
Richie JohnsonMonday and I still can't do anything. Chad is gone till Sat, my Mom left this morning but my friend Marcie is here with me. She is COOL! Pathology should come this week so I know what type of radiation and chemo I will be doing. sigh. Not looking forward to that.

August 10 at 4:51pm
Richie JohnsonA crazy fact: I have had 3 malignant tumors in my life. Why can't I have the same odds with the damn Lottery that I have with Tumors! I should be a multi-multi- multi millionaire by now.

August 15 at 8:35am
Richie Johnson

Called Drs office yesterday and they told me that my Dr is out till next week and besides that, they can't talk about this over the phone. I have to get the info from the Dr at the follow up appt which is this coming Thursday. So I won't ...know about chemo or radiation till then. See my profile for a picture I posted yesterday of my scar and the 16 staples in my head.

August 15 at 10:51am
Richie JohnsonChad is on a plane on the way home! YEAH!!!! I am so happy that he will be home soon. I really miss him!

August 16 at 12:37am
Richie Johnson

Chad and I saw "District 9" tonight and LOVED IT! Awesome story and done so well. I wish Peter Jackson had done the Transformer movies. Also went to see Jake at Toads Bar and Perk and he is just too entertaining. Always good to see my friend, but to just get to sit and listen to him sing is just a fantastic pleasure. Thanks Jake, you are so entertaining and have a beautiful voice!

well it is now wed AUG 5 and I am already sitting up in a chair and using the computer 1 day after having brain surgery. who uses the term "well, it ain't brain surgery." My dr might not care for that saying so much since she is apparently pretty damn good at it. A 6 hour surgery turned into 2.5 hrs. When I started waking up in my room I could see the clock on the all and it stated the time, day and date and all i could see what the time and I knew that it should after 3 at the earlist if not after 4. So I was thinking that it must be 1 something the next morning. What is wrong.. why did it take so long? A little panic started setting in and then i heard a voice say that the surgery went great and it was a lot shorter than they thought. I couldn't believe it. WOW.. it went that well. I was told afterwards that they were able to use the old cut in the skull to go in and that took away a lot of time They originally thought they may have to do a new one over a few millimeters but they ended up not having to. Plus the 3d Rendering of my head and brain they did before the surgery helped them know exactly where they needed to cut and get way out around the tumor so they feel really good about getting it all. I hope so since the last surgeon was confident that he got it all as well and he may have.. just cells could have been left that are undetectable and then they started a new mass. I really, really don't want to go through this again.. I feel miserable!!!! my head hurts really bad, duh.. and I keep getting the hiccups and they are making me nauseated.

The above paragraph was written this morning around 8:30 AM. I've had several vistors today which was really nice but I am still in ICU although they down graded me to regular about an hour ago and they removed all the tubes there were attached to me except a couple for them to use to inject meds. there are no open beds in the hospital and one of the nurses said she heard that the hospital was going to go into deversion mode which means they woulld have to turn away new patients until they got room unless they were an out patient. Because of that. I will be staying in ICU but I won't be woke up every hour for them to take vitals thank goodness. And since I am in ICU, I have my very own personal nurse. Sweet!! So far the nurses have been absolutely amazing! Last night was Leigh Ann, today was Rebekah and Sarah. Today was Sarah's last day as a nursing student. She graduates on Saturday. She was really good today too.
Earlier today I was sitting in the chair and because they said my Dilantin numbers were low, they brought in a bag and did a drip for an hour to get thet up quickly. About 10 minutes after it was complete, I got really dizzy, my hands started tingling and my vision got majorly blurry. It was really scarry. They put meback in bed and for a minute it went away but it started coming back along with my llips and tongue started tingling.. I could feel my whole body from my head to my toes and it was all a little floaty.. very strange to describe cuz I just don't think you can decribe that. My surgeon, Dr Pollack came back a little while after that and she said that it was most likely an after effect of the meds. it hasn't happened since so that is a good thing.
The hard part now is waiting 7 to 10 days for the pathology to see how much chemo and radiation I am going to have to take. They will be taking the bandages off tomorrow so I can see the damage. So ready to go home.

Well, the camping trip is now over and Chad and I are driving home. I love having the ability to be on the computer in the car. It really makes the almost 4 hour drive go by so much faster. And Chad is being really sweet and driving so I can play on the computer. Well, he is really sweet to me most of the time.. mostly. hehe. Sad that the camping is over and now back to reality. Having dinner with friends this evening and then I have Pre-anesthesia screening in the morning at 8 AM at KU Med and then I have to be back at the hospital on Tuesday morning at the un-Godly hour of 5 AM. If God meant for people to be up at 5 AM, he would have put it later in the day. The surgery is expected to last about 6 hours and Chad had a really good question about that. Does the Dr get a chance to take a break? Not sure I will get a chance to ask her now but I am confident in her abilities and I know this is all going to go well. I'll be back home hopefully by Friday evening and resting nicely.

Well, Chad and I are on our way to go camping till Sunday. Since I am going to have to miss a big camping trip next weekend that a whole bunch of our friends are going on, we decided to go on our own this weekend. We both love camping and we'd really love to have a camper of some kind but we really need that right now like I need another whole in my head. HA!

Well I had my consult today with my surgeon. I got to meet Dr Ania Pollack whom is going to perform my surgery and she is awesome. She sat down with Chad and I and really explained things in simple terms. She said she is really good friends with Dr Taylor (my Oncologist) and that made me feel good right off since I love Dr Taylor so much myself.

Dr Pollack said that since I am right handed, having the tumor in my right frontal lobe was the best place for it. Based on being right handed and some other info, she said I mostly lived in my left brain. This was a lucky thing she said and she didn't foresee any problems.

I have to be at KU Med at 5 AM Tuesday morning to check in at Admissions and then go to the Same Day Surgery Waiting Room. They will get me and prep me for a special MRI where they are going to put these little stickers all over my head before the MRI so that the machine can come with a 3D rendering of my head. They will then do an MRI of the brain and and they will overlay these together to have a 3D rendering of my entire head and brain. This will help them to determine just what portions need to be cut out. Not sure I am explaining this so perfectly but that is the basis. The surgery should start around 730 or 8:00 AM.
The procedure is called a Right Frontal Craniotomy for Stereotactic guided resection of right frontal lobe lesion and a possible lumbar/extraventricular drain placement (to drain off some spinal fluid to help reduce swelling). Possible side effects are bleeding, infection, allergic reaction, problems with my heart or blood pressure, stroke, paralysis, cerebral spinal fluid leak, nerve damage or even death. I had to sign a statement that says I understand that these things could happen.

I should be out within 72 hours she said and the reason for that specific number it is the peak time for swelling to stop and they will see at that point if everything looks good with me.. if I am ok, then she will send me home.
I am already looking forward to coming back home so that friends may stop by and visit me.. or at least I hope some do. I say that now, but I wonder how I will feel when I actually get home.. we'll see.

It's the week before my surgery and I can't stop thinking about it of course, but I do have some good friends to keep me busy for the next few days. Tonight I am going over to my friends Jay and David's for a fish fry. Tomorrow afternoon, I have a consult with my Dr and then afterwards, dinner with Travis and Erin. On Friday, I am having lunch with Jonathan and Lena Andrews and their babies (Clara and Issac). Chad and I leave Friday afternoon to go camping and will be back Sunday. Good grief! I will be worn out so I can sleep right through the surgery without any anesthesia. Like hell I will... bring on the anesthesia!!!

Of course, having a craniotomy... having someone mess around with your brain.. is very dangerous, but amazingly the down times are not that bad. Crazy to think I can be out of the hospital in 3 days. To me, the worst part is afterwards IF I have to go through Chemo and Radiation again. I remember last time a week after surgery, I felt so good, I was ready to go back to work. I just didn't realize the effect that the radiation and chemo would have on me. It took about a week and a half before I really started to feel their effects but when I did, umph, it was rough. throwing up, etc, etc, etc.. no need to explain it all as I am sure you get the picture. That is when I really started missing work. That is the part I am not looking forward to. Of course, they don't know if this one is malignant or benign but the odds that it is benign are pretty darn low. One can always hope though. Just having the surgery, healing from that within about 3 weeks and getting back to life would just be awesome!

The board decided on my surgeon and they chose Ania Pollack, G MD. I have heard great things about her so I should be in really good hands. I have a consult with her on Thursday, July 30. I have spoken with her nurse, Ron Couey and he said that my surgery will be on August 4th or 5th. I will know for sure on Thursday. It is not expected that I will be in the hospital for more than 72 hours unless there are complicatio ns. Because I am young (somewhat) and healthy, they really expect nothing unusual. I will be able to go home to rest and heal.

I am including the image that Dr Taylor showed to me of the new tumor that has shown up. You can also see in the area around the skull where they cut out a piece to go in to remove the first tumor. I assume they will use the same area to go after this one.

I used Live Journal for a while but I didn't really like it. I couldn't customize like I wanted. I prefer having my very own website. I want to bring all my journaling back to one place so I can have it for myself if not for anyone else. The next 10 posts are from Live Journal that I am bringing over to this website....

Well, wouldn't you know that freakin' 4.5 years after the discovery of the first frackin' tumor, they would find another one. Well, this time I am not going to continue updating this website. I am creating a new place to check on my progress at live journal... but I didn't like it. Thanks for caring and keeping up with my progress.

It has not been over 4 years since I got my cancer and I am still cancer free. My last MRI was 3 weeks ago and was still clear and all the meds I take anymore are seizure meds and something that keeps that med from giving me stomach problems. I have been contacted many times from people wondering how I was since I just abruptly stopped writing here. I just got to where I was so busy with life again that I didn't have the time to update here regularly. So, life is good.
Thanks so much for caring and reading my blog and seeing my site.

THURSDAY WAS A GREAT DAY! I had a Doctor visit with Dr Taylor, my oncologist and she took me off 6 of my 13 prescriptions, INCLUDING CHEMO!!!! YEAH!!! Although she did double my anti-depressant, Lexapro. I have had some bouts of depression here and there and they just come and go like the Sun going behind a cloud and popping out again. Also, I have not been able to feel real internal happiness. Even after buying a house, I wasn't able to feel that "giddiness" inside that I think I should have felt about it. Dr Taylor said those could be side effects from the meds that I am on and now that I am going off some, I should start to feel better and doubling the Lexapro for a while should help too.
Thanks for checking on me.. I'll check back in soon.

Well, I know I have been a pathetic putz and not kept up with this blog but my 20 year reunion has taken most of my time. I have 5 weeks left and I will be done with it. Well except for making the reunion CD that I am going to make for everyone afterward. That shouldn't take all that long though and I am not going to go all fancy on it.

Everything with the cancer is still good. My MRI's have came back clean since the last time you checked in with me. I am still on meds daily but the one I hated the most, dexamethasone (the steroid), that caused the most side effects is now out of the picture. YEAH!

Another exciting update is that Chad and I bought a new house. No more apartment living. No more rent. No more throwing money away. Now it all goes into something that you can enjoy and call your own. Although I feel a little behind getting my first house at 38. But hey, at least I have one now. The new dining furniture comes tomorrow.

More updates later and I swear I will not let this go this long again. I really will try to do regular updates. I have recieved some mails asking what is up with me since I haven't updated. So as long as I have readers.. then I will do updates. let me know that you are still reading and I will certainly do them.

Well, I am sorry that I haven't written anything in a while but I have been really busy with my 20 year class reunion website. If you are interested in seeing it, just go to www.2xst.com/WHHS.

I have only had 2 other really bad incident headaches since the one I wrote about in September. They were not as bad as that one but they both required getting to the cancer center and getting an IV for fluids and some Demoral for the pain. My doctor then decided to try me on Imitrex. Imitrex is specifically made for Migraines. We don't know what is causing these headaches to get so bad so testing out new meds till we find one that works is the only way I guess. Well, about 3 weeks ago, I got one of those bad headaches. I tried the Imitrex for the first time. They are single shot nose sprays so it can get right into your system. The headache didn't go away right away but it did slowly disipate and I didn't end up at the cancer center so that was definitely a plus. I have used it twice since then but I used it before the headache got to bad. I have found that if I do that, then it stops it before it has time to grow to big.

I am still doing chemo as well. Unfortunately I will de doing that until September 2006. It isn't really that bad though. Since it is oral chemo, it is easier to manage. I can just take it at home and it I am glad that it has way fewer side effects than the other types of chemo.

Again, I am sorry that I haven't kept up with my blogs like I should have. I will start doing better. Thanks for those of you that hounded on me about it. hehe.

Take care and if you were in my graduating class - I better see you this next summer at the reunion.

Wednesday was the worst day yet since my surgery. I went to work Wednesday morning and I started getting a headache right before I got there. That actually happens a lot and if I get a Dr Pepper and have something to eat, it helps it sometimes.. Well this one wasn't helped so I went into the "Quiet Room" - a room we have in our building with a recliner just for times like this and I sat in the dark for a little while but it just got worse. It escalated quickly and I threw up in the trash can in that room. I sat on the floor for a while as it was cooler until I threw up again. I knew then I needed to get to the hospital as it was going to be one of those bad ones. Before I even got back to my
desk it came up again and I barely made it to a trash can. Everyone around apparently didn't drive themselves that day and had no car so I had to drive my self in that much pain to the hospital which is about 30 minutes away from work. (we are working out an emergency plan now in the office so that there will be someone to take me if this happens again.) I had to pull over 3 times on the way to throw up and I was trying to
get a hold of Chad at the same time. I finally did and I made it to the hospital and they gave me 2 shots of 3 mg of morphine to get the pain to go away. And they hooked up and I.V. to me and gave me more morphine, I believe 2 mg more. Usually it just takes 2 to 4 mg and it calms me down and make me feel better.. This headache made me scream for mercy it hurt so bad and I couldn't even lie still for a moment. I was at the Cancer Center for about 3 hours and then they finally let me go home. I slept until like 7 pm that night and then got up for about an hour and half and went right back to bed and slept all night without a problem. Thank God I felt better the next day. Wednesday is what I consider a nightmare!

I had an appointment to see Dr Taylor yesterday. She wasn't there to see the episode on Wednesday but she heard all about it. This was my monthly visit with her. I start a new round of chemo tonight. I always see her the day before I start a round of chemo.

We talked about the headaches and she said she thinks that these types of headaches I am having are not common to a brain tumor patient. She thinks that I am having Migraines not related to the tumor but the tumor may be escalating them. I had headaches before the surgery but never had one made me sick before. Now that happens most of the time. Dr Taylor decided to give me some Migraine meds and see if they would help better than the other stuff that I have. I certainly hope so.

We scheduled another MRI for next month before our visit. She wants to see if that little thing they found on the last one is doing anything or if it may be scar tissue developing or something like that. I hope that is what it is. But if it turns out to be the worst, that the tumor is re-developing, we'll just freaking go after it again. Damn thing will not get the best of me. Nope.

Tonight, I have friends that are holed up in Houston riding out Hurricane Rita. Please pray for them that all comes out ok.

I'm back... thought you got rid of me didn't you? No chance. I am around to stay buddy and that's that.

I had an Oncologist appointment with Dr Taylor today. She is one great lady. She is so upfront with you. She came in and did her normal check me all over routine and said she couldn't be happier that I look and feel so great. I quickly learned why she zoomed through all the piddly stuff this time though. My MRI tests from last week were in and she wanted to go over them with me.

We went into another room where there were a couple of large flat screen monitors. She pulled up my MRI from May and then the one from last week. She also had the report from the radiologist.

The report of course was full of mumbo jumbo that no normal person understands but at the end of it, they put the final impression and it stated this:
"Development of a small area of new abnormal enhancement in the right frontal lobe adjacent to the operative site. Findings are compatible with recurrent neoplasm."
In a nut shell, that means RE-GROWTH. Not a good thing to hear. It says that it is about 1 cm in length.

Dr. Taylor was very optimistic about it and said it was very possible it was from the treatments. She went through the MRI with me and there was so little to see that she really believes this is not truly re-growth. I am glad she fills so good about it, and I pray that it nothing. But on the safe side, she scheduled another MRI for me in 2 months instead of waiting 3 this time.

We have to stay ahead of it, not let it get ahead of us. It can be beat and I will beat it.
Thank you Chad for being here and taking care of me during this whole ordeal. Your the best!

Ok, I haven't been very good at keeping up with my weblog... so shoot me. I bet that wouldn't hurt as much as some of my headaches.

I have been doing ok for the past couple of months, just doing my chemo like I am supposed to and taking handfuls of medication like my oncologist tells me to and going to the ER once a month for dehydration. I get a headache that I can't stop, it excalates into a migraine, I get sick, I start throwing up and I can't stop until I get so dehydrated that I have to go to ER to get fluids, anti-nausea and pain meds pumped in me via I.V. It only takes a couple of hours in the hospital on I.V. and I am basically normal again. I wish I just had my own at home so I didn't have to go to the ER or the Cancer Center for it.

Went to Omaha a couple of weeks ago and I got sick there and had to go to the local ER. Thank goodness they were nice and listened to Chad at what I needed and they gave it to me without too many questions. It was obvious how much I was hurting and that I needed it.

Medical bills have been pouring in like water. Wow, it is amazing what medical coverage is like in the U.S. I have a friend in Toronto that keeps telling me to move up there and I wouldn't have to worry about that. They pay $35 a month for prescriptions and that is all. The rest is covered. Why can't Bush get something like that going for us here in the U.S. Well, he can't do anything else right, so would I expect that he could do something like that.

Still bald. My hair on the right side where the scar is, is almost there in growing as fast as the other side. As soon as it catches up, I am going to let it all grow back out. It has been kind of neat with a smooth head but is too much of a pain to shave. I have had lots of compliments on it and many think I should keep it this way. I'm not so sure. My hair grows way too fast for that.

A lot of things have happened since the last entry. Good and bad. After radiation, I started back to the gym trying to gain some strength and stamina back. The radiation and chemo just really make you tired. I was on a good routine again. After April 15, radiation and chemo stopped for a couple of weeks to let my body build up the immune system and white blood cells again. On May 6, I started the high doses of chemo - 400 mg for 5 days. It went really smooth and only got nauseas a couple of times and that wasn't really bad. Right after I stopped the chemo, I got what I thought was nothing but a pimple on my upper thigh. That is what it started out to be but since my immune system was low and I had a low white blood cell count from the chemo I just came off of, there was nothing to fight it and make it go away so it abscessed and got infected. It grew quick. It was already poisoning me before I could get into the doctor. I ended up having outpatient surgery to have it removed and the next day I was so sick I couldn't even talk. Tuesday was the surgery, Wednesday I was sick and Thursday, my oncologist checked me into the hospital. I was there for 2 days with IV's pumping in antibiotics and also other fluids as I had dehydrated from being so sick. I was really a lot better by Saturday but they wanted to hold me anther day or 2. I didn't see the need in that so I asked them to let me out and they did but with the promise that if it even just barely looked like it was getting bad again to come back. Oh, that would be no problem as I did not want to be sick like I was on Wednesday again. It is healing fine now, but takes some care. Wow, all the little problems that cancer and chemo can cause. Why do I have this crap? What makes it start? Why did it end up in my brain? Apparently no one can really answer these questions. I just hope that the treatments that I am getting take care of it. While I was in the hospital, they went ahead and did anther MRI that I was scheduled for next week. They said it looked good and they didn't see any re-growth of the tumor. Well, that is definitely good news!

Some bad news is that just being in the hospital for this abscess wasn't all that happened this past week. I got word that a friend of mine in California whom was a writer had found out he had cancer in 5 different organs. He had been in the navy years ago and was always getting sunburned from being on the decks of ships. He had a melanoma removed from his face once years ago and they said it was fine. They didn't have the skills back then to know what to do I don't guess. They didn't do anything after removing it. Well, apparently it wasn't fine and the cancer spread through his body. I got an email from him saying he was going to stop writing and enjoy some things he wanted to do and do some traveling. He was going to Chicago this week and I am going as well. We had decided to meet up there and talk about the "C" word that everyone seems to have such a hard time saying and have a few laughs together. - I got an email a couple of days later saying that he had died of a heart attack. Other complications can stem from the cancer and his did.

More bad news... I wrote about my cousin on the welcome page of this site. Paula. She has been fighting her cancer for 4 years. We had gotten close and talked fairly often although we have a big age difference between us. She is the same age as my dad. They went to school together so they were really close. Paula started calling me more often in January of course when she found out I had cancer as well. She was such an inspiration as she was always making sure my spirits were raised and telling me of her own accounts so I might know what to expect in even a worse case scenario. She was so pleasant to talk to. Her voice had gotten a little raspy from all the treatments she had had but still was upbeat. She lived in Memphis and I planned over the last year to get over there and visit her as I knew that this could happen. I never did and now I do regret not just making a weekend and going. Paula passed this past week as well. I know she had been hurting and her fight is over. I was told she had passed out twice and they revived her but after that, she asked them not to revive her again. The 3rd time she went unconscious, it was 3 days before she passed. God Bless You Paula! You will be missed more than you can ever imagine!!!!

I have been lazy and haven't updated this since I had my last radiation treatment so I thought I better get on it since a couple of people have asked me why I haven't. So here goes.

My last treatment was on April 15. I was all excited about it and hoping that I would be able to go into Radiology/Oncology at KU Med and tell all the nurses and radiation techs goodbye after getting to know them all so well. After all, I did see them pretty much every day for 7 weeks. Well, on Thursday the 14th, I got a headache and a little nauseous at work and I went home early. I felt better that evening and didn't think much of it but I woke up at about 4 AM sick at my stomach. I was sick with a migraine style headache all day. I did make it to my last treatment but certainly not feeling well. I hated that my last day there had to be like that but I know they understood. Everyone that worked there had made a comment at some point about how amazed they were at how good I felt all the time and how upbeat I always was. I can't help it, I am just like that. I hate being a downer.

Today, I had another appointment with my Oncologist. Everything seems to be going ok and she arranged my new schedule for my chemo that I will be taking for about 18 months. I was taking 160 mg of Temodar with my radiation but now that radiation is over, I am going to be taking 400 mg of Temodar. I start on it May 6 and I take it for 5 days. I will also be taking a whole new set of other drugs to help counter balance what the chemo is going to be doing to my body. yippee yeah, more drugs... can you feel the sarcasm? ;-) I will be taking Temodar for 5 days and then off of it for 23 days then start the cycle over again.

My next MRI is scheduled for June 1. That is the day I am waiting for right now as I want to see for myself that nothing has come back since the surgery and that all this radiation and chemo isn't for nothing. I feel confident that it is going to be ok. But who knows for sure really? Well, damn it, I do. I just know it and that is all there is to it.

Well, I have 5 radiation treatments left. Also, the radiation blasts are going to be more refined for these last 5 as well. The area of space that the radiation gets is going to be about half the area they have been getting. I still feel great and no real side effects from chemo to speak of.

I visited my Oncologist last week and she took blood work and said it was truly normal. She was very happy with the results and my checkup. I will be getting an MRI in about 6 to 8 more weeks and then we will really know how things have been going. I am confident that there will be no new growth.

I have now completed my 4th week of radiation and chemotherapy. I still feel pretty good and have decent strength and I am continuing to work. The biggest burden is having to get rides everywhere I go. I won't be able to drive again till July because I had a seizure in January. I will be able to drive again then as long as I do not have anymore seizures or the 6 months starts over.

Keeping my head shaved is turning out to be a chore as well. Those of you who know me well, know I have a very thick head of hair (usually) and I am not a good candidate for having a shaved head. WAY too much work. I already have a hard enough time getting in to get my hair cut often enough because it grows so fast. The right side of my head has pretty smooth areas on it because that is where most of the radiation enters. The hair on the left side of my head grows really fast and I have to really work at it to make sure it doesn't take over and I look funny with a half a head of hair. That would not be too pretty.

This past Tuesday, while in radiation, I noticed a different angle of my radiation machine. It was really obvious to me that it was different but I didn't know if the doctor's had changed the routine of the machine or not. I mentioned it to them when we were completed and they told me the next day that I had been correct and they had made a mistake. Dr. Wang told me that it was less than 5% of the radiation treatment that I receive each time so it wasn't dangerous to me in any way. It was only one angle out of 7 that was incorrect. If the amount of radiation that I had received in that one blast was 10% or more, they would have to report it to some agency. I do feel confident in the staff that is working with me and I certainly don't expect anything like that to happen again.

I have an appointment this week with my oncologist for lab work so we will see how things are going then. The blood work that the radiologists take every week I am told is still normal. No significant changed whatsoever. That is certainly good news.

I have been working on getting this website together so I haven't been writing about what I have been doing as far as treatments go so this is really my first entry. I just finished my 3rd week of Radiation and Chemotherapy. So far I haven't really felt any different except for an exceptional amount of headaches. I don't have the kind of strength I had before I started but it isn't keeping me from going to work. Not yet anyway.

A couple of days ago, I noticed some hair on my desk at work and wondered where that came from. I didn't put 2 and 2 together and this morning, I was in the shower and chunks of hair started coming out. After a few bald spots had formed, I knew it was time to go ahead and shave the rest off. So, I am now officially bald.

Losing my hair is really no big deal. I know that it will grow back. The only issue that I had emotionally with this was that I feel like I look like a cancer patient now. With hair, no one really noticed. Without, you can see the scar and you can just tell there is a reason I have my head shaved. It is just going to take some getting used to. And I have 4 more weeks of radiation so I know I won't be growing it back for at least a couple of months. At least it is spring and it isn't going to be as cold outside.

On the weekends, I don't do radiation and this is because my good cells are supposed to have some time to reproduce. Hopefully there are no "bad" cells left to reproduce but yes, they could be too if they are there. We'll keep an attitude though that they are all taken care of and are no longer there.

I wanted to say thank you for coming to my sight and thanks for signing my guest book. I hope that this is helpful to get to read how things are going with me. I am going to write something here every day or two to keep everyone informed.

Thanks to everyone that sent cards via snail mail or well wishes via email. I really appreciate them very much. My meds make me emotional on some days and getting those really makes a difference in how I feel.

		Richie's Blog
Richie Johnson
Home - The Tumor - Treatment - Anaplastic Astrocytoma - Blog

August 4 at 6:01pm Richie Johnsonis in the neurosurgery ICU. He has been having some pain. I knew he was okay when the first thing out of his mouth after surgery to me (Chad) was "Who are you?" They didn't manage to take out his sense of humor.

August 6 at 12:34pm Richie Johnson discharge is scheduled for 2pm today, 48 hours after surgery.

August 7 at 5:28pm Richie Johnson

August 9 at 12:01pm Richie Johnson

August 10 at 10:18am Richie JohnsonMonday and I still can't do anything. Chad is gone till Sat, my Mom left this morning but my friend Marcie is here with me. She is COOL! Pathology should come this week so I know what type of radiation and chemo I will be doing. sigh. Not looking forward to that.

August 10 at 4:51pm Richie JohnsonA crazy fact: I have had 3 malignant tumors in my life. Why can't I have the same odds with the damn Lottery that I have with Tumors! I should be a multi-multi- multi millionaire by now.

August 15 at 8:35am Richie Johnson

August 15 at 10:51am Richie JohnsonChad is on a plane on the way home! YEAH!!!! I am so happy that he will be home soon. I really miss him!

August 16 at 12:37am Richie Johnson

August 4 at 6:01pm
Richie Johnsonis in the neurosurgery ICU. He has been having some pain. I knew he was okay when the first thing out of his mouth after surgery to me (Chad) was "Who are you?" They didn't manage to take out his sense of humor.