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Re: I have cancer.

Mon May 18, 2015 9:34 pm

Went to what I was expecting to be my first radiation treatment today. I wasn't able to sleep at all last night. I had an anxiety attack before getting in the car to go. I find out that I am not getting my first dose, but just getting more cat scans and x-rays to get me lined up in the machine. (Last week I was in a different machine that only does cat scans, this machine does all 3, cat scans, x-rays and radiation all in one device.)

When they placed the plastic mask over my face and locked it into the table it was VERY tight. They told me it shrinks a bit after they make it the first day. It was so tight today that I couldn't even open my eyes and it was mashing the base of my scull into the hard clear plastic headrest. I had a dent in my skin for about an hour after I was finally let out.

It took them about 20 to 30 minutes to get my body lined up with the lasers and the marks on my body. Then they had to take a cat scan to see how my insides were lined up with the previous session. They had to reposition me slightly and try again. I was getting panicky at this point and they had to pause for a bit until I calmed down. They leave the room again and let Beth talk to me over the intercom to help reassure me. I can hear the machine clicking and buzzing quietly as it swirls around me. Beth can see the images they are taking as they ensure I am aligned exactly right. I listen to the Eurythmics play 'Sweet Dreams are Made of These' on the radio in the room which they turn up louder each time they leave the room. I can picture the video in my head as the machine buzzes around my head.

Lastly they have the machine take numerous x-rays thru the radiation beam device. I can hear the hum of the x-ray each time it turns on for about 5 seconds. What is unusual is that I see a blue light in my eyes every time it is on... It starts out faintly and gets almost too bright to bear. The color is like that of a natural gas flame. All this while my eyes are closed. I wonder where the blue light is coming from and ask the rad tech about the blue light and she sounded confused:
Her "What blue light?"
me "The light I saw every time you turned on the x-ray."
her "Oh, that must be from your optic nerve."

After two sessions of that lasting several minutes, one with me lined up normally, and the second with the bed angled at 270 degrees I was finally done and they began to let me loose. I had a headache from the pressure of the mask and my shoulder, neck and skull are sore from the uncomfortable position. They tell me they have to do a few more things tomorrow and then I will get my first dose of radiation. I have chemo at 9 in the morning so I will go straight there after my chemo is done. Gonna spend all day at my appointments. Yuck.



Re: I have cancer.

Tue May 19, 2015 5:00 am

Wow. I don't know if I could go through with all of that.

Re: I have cancer.

Wed May 20, 2015 12:52 am

Today was a long day but it mostly went well. I was able to get some sleep last night but that was mostly because I was exhausted form lack of sleep the day before. Woke up at 4:30 am and couldn't fall back asleep. I remembered not taking my Xanax until I was full into my anxiety attack yesterday, so to day I took one soon before I got out of bed at 8. No anxiety attack this morning!

The morning started at 9 at the chemo doctor. I was nervous because I had a bad reaction last week and almost had to go to the ER. Wearing the hot pink Minnie Mouse bejeweled hat with gold tiara and veil was making everyone smile and laugh, and helped keep my mind off of my worries. Thank you PD2's better half for the awesome suggestion, it was a big hit!

Chemo always starts with inserting the right angled needle into my chest port and then flushing it with a saline drip. Then they give me IV Bendryl to fight off any allergic reaction and Decadron which is a steroidal anti inflammatory. Today they also added Ativan which is also a anti anxiety drug. Other then all three making me sleepy, everything went well today without even the slightest reaction. Thank goodness, I don't want to go thru that again.

We didn't get done with chemo until about 1 pm. Then we drove straight to the hospital for radiation treatment. I wore my beautiful hat as we walked in the hospital, the check in off and into the waiting room. Everyone just loved it! It was nice because the waiting room is only for patients and family. There is usually an awkward silence in there because you know everyone is going thru a life altering experience. Today way very different. Everyone got a confused smile when they walked in. I gleefully explained that I decided to have a silly day and we all shared a bit about what we were all going thru. Everyone in the room was smiling instead of that blank stare that most have. I really appreciate anything makes me smile when I am having a bad day. That hat really turned my day and many others) around.

I had to wait an hour before my treatment since I actually had no appointment time due to not knowing how long chemo may take. They still had to do a few more 'measurements' like they did yesterday before my actual radiation treatment started. I was not anxious like I was yesterday wen they clipped my head tightly to the table. Musta been the Xanax and Ativan helping me out!

It took them three times doing cat scans and then readjusting my body just because things we literally off by only on millimeter. My the third 're-take' I was getting really bad lower back pain and shoulder pain. I was dying to move my body for just a moment to relieve some of the pain, but I have to remain as still as possible or they have to start over, but after 45 minutes of waiting and waiting I was verbally complaining that they need to get this over with! The doctor (who must approve the actual settings for the treatment finally agreed mostly conceding that I has been on the table too long and they need to use the last measurements that were not perfect (they really do try to get it perfect!) but within limits. THANK GOODNESS! Now I only had to stay still for about ten more minutes while I received my first doses of high level radiation.

I could hear the machine slowly rotate from on position to another while ironically the Eurythmics played again and then The Clash played 'Rockin the Casbah' which gave me fond memories of the Gulf of Libya and many tours in the Persian gulf fighting the bad guys. I could hear the tiny motors adjusting the dozens of tiny metal sliders that adjust the beam shape aperture to match the shape of my tumors in just a second or so. Then I hear the buzz of the magnetron as the radiation beam buzzes for from one to five seconds blasting my tumors with high level x-rays. On some of the shots I see the blue flashes in my eyes, but not every time. Sometimes they are bright, sometimes faint, and sometimes not at all. That is likely because of how close or far away they are from my optic nerve. Finally after just over an hour the unstrap me and turn me loose at 4 pm.

I fell asleep in my clothes soon after hitting my bed. Slept til about 9. Luckily no nausea from chemo this day either, even without taking any of the 3 nausea meds they gave me. Lets hope the nausea never comes. I woke up with my favorite Subway BMT sandwich right next to me! What an awesome wife I have holding my hand all day long, coming home and cleaning the house for company coming soon and then having my favorite sandwich there for when I wake up. This could have been a bad day but all things considered, it turned out great! Thank you to everyone who sends me well wishes, kind thoughts and prayers. I read EVERY ONE and they really do make a difference.


That's me AFTER the Bendryl and Ativan! Happy times!


Sleeping it off anter getting tanked up in chemo!

Re: I have cancer.

Wed May 20, 2015 7:27 am

Best wishes . Cancer is no fun. I hope the treatments cure you. May the pizza God's help with a speedy recovery lol.

Re: I have cancer.

Tue May 26, 2015 4:52 pm

Today was my third weekly chemo treatment and daily radiation treatment #5


radiation waiting room

Both procedures went smoothly today. Chemo took about 3 1/2 hours and radiation took about half an hour. Still no nausea yet. But you can see the hundreds of pimples and rash on my face. The rash and pimples are on my face especially around my mouth and nose, some on my forehead and cheeks, and all over my neck, scalp, in my ears, and my entire front and back of my upper torso and now on my arms. I am on blood thinners, so many of the pimples bleed after they pop.

Re: I have cancer.

Thu May 28, 2015 2:15 am

A video showing and explaining the details of my daily radiation treatments.

Re: I have cancer.

Tue Jun 02, 2015 5:19 pm

Some updates from the past few days... The radiation and chemo are beginning to take their toll on me, so I haven't been getting on the computer much lately, but I feel a bit better today, so I am getting caught up on updates:

My wife posted on Saturday:
[Gregster] is having a hard time right now. The rash is getting worse and has gone into his mouth. He is also having aches and pains which are side affects of the chemo. There is really nothing to do except pray for his comfort and remind him he is almost to the half way point. He is using Dove soap and Aveeno, but they only help for a little bit. I wish I could make the pain and discomfort go away, but we will get through this. :D

I replied:
Thank you everyone for your thoughts, prayers, and excellent suggestions. Unfortunately I cannot take a bath because I have a g-tube in my stomach and can't let it get under water. I can only take showers which due to the rash on the entire upper half of my body neck face and scalp are becoming borderline painful. The rash looks like severe measles combined with severe acne. It feels like I have a sunburn everywhere. Even laying down in bed or putting my head on the pillow is uncomfortable. I just have to deal with it. The rash feels like sandpaper which I am constantly tempted to scratch. Unfortunately I find that I can't stop.

The soreness in the skin on my neck, and my neck muscles, and inside my mouth and tongue is from the radiation. It's kind of like having a sunburn on the inside and outside. I'm not sure if it's the radiation or the dryness in my mouth causing the ulcers on my tongue. They gave me a medicated salt mouth rinse called Nutrasal , and they also gave me liquid lidocaine that I can swish around my mouth to numb my mouth. That will be most helpful when I am trying to go to sleep but can't because of the pain of my mouth. I can't eat when I'm using the lidocaine because I could choke.

All things considered I try to remind myself that this is still much better than the alternative if I wasn't getting treated or the treatments weren't working. I'm just a little disheartened that I'm showing symptoms from the treatment so quickly I thought I at least have another week or two before they would start to show up and make me uncomfortable.

I posted Monday morning:
This officially sucks. Even eating a Reese's Peanut Butter Cup is painful. :cry:

Reese's Peanut Butter Cups are my favorite snack food. I bought a bag of them while at the pharmacy yesterday to help cheer me up and get some calories in since eating has become difficult. I was really disheartened when even those were not easy to eat. I have only been able to eat 5 so far.

Re: I have cancer.

Tue Jun 02, 2015 5:32 pm

From yesterday afternoon (Monday):

I look like a frickin ogre. And yes it hurts as bad as it looks. I have the stuff on my chest, on my back, both arms, my neck, and even on my scalp in my hair. My skin feels like rough grit sandpaper. I hope the chemo is attacking my cancer even worse than its attacking me.


Re: I have cancer.

Tue Jun 02, 2015 5:38 pm

From today:

It's Chemo Tuesday... This is dose number 4, so I'm halfway through my 8 week treatment.
Time for another Mickey Mouse hat!


This was the first week I was able to get the chemo infused over just one hour which is great news! My first treatment took over 6 hours due to my adverse reaction mentioned in a earlier post. IV Benedry and Ativan are fun!

Re: I have cancer.

Tue Jun 02, 2015 6:53 pm

Also from this afternoon:
Week 3 day 2 of my radiation treatments. — at Naval Medical Center Portsmouth.


I am actually feeling a litter better today, emotionally and physically. I give credit to wearing the hat today. Everyone that saw me wearing it immediately smiled and struck up a conversation.That in turn distracts me from my issues and makes me smile too. Smiling has become very important to me. I know that when I am able to smile, I actually feel a little bit better. It's hard not to smile when a stranger is smiling at you cheerfully asking questions.
I wasn't feeling well at all yesterday and was getting depressed at my numerous difficulties with eating that showed up this weekend. I am already loosing weight again, so I gotta get creative and find things I can tolerate and keep my strength up.
My neck burns like it's under a broiler right now. Between the radiation burns and the rash from the chemo it feels like raw hot cactus almost constantly. I have medicine (Biafine) that really helps lessen the pain, but I left it in the bag that Beth took to work today, so I will have to wait until tonight to use it. I will get by with the Aveeno moisturizer for now.
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