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Richie Johnson

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Tuesday, July 21, 2009  9:12 PM

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 mrj5068.livejournal.com. Thanks for caring and keeping up with my progress.

 

Friday, Feb 14, 2009  3:09 PM

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.  

Friday, June 2, 2006  5:53 PM

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.

Tuesday, May 16, 2006  4:20 PM   (hehehe)

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.

Thanks for reading -  Richie

Thursday, December 15, 2005  11:09 AM

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.

Take care.

Friday, September 23, 2005  10:48 P.M.

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.

Thursday, August 25, 2005

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!

Sunday, August 7, 2005  7:20 PM

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. 

Thursday, May 26, 2005  8:12 AM

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!!!!

Thursday, April 28, 2005   9:00 PM

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.

Sunday, April 11, 2005    2:18 PM

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.  

Saturday, March 26, 2005    6:31 PM

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.

Saturday, March 19, 2005    6:15 PM

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.  

Thanks

Richie

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