Treatment is OVER!

Radiation treatment is done! 17 days of radiation went by really fast and I cruised through it with ease. The only problem I have experienced so far is a very sore throat. It feels like my throat is lined with needles and every time I swallow, my throat contracts and the needles stab my throat. This will probably go on for the next two weeks and may get worse. The radiation is cumulative so it will continue to do it’s job for the next 2-4 weeks. After 4 weeks I will go in for another PET Scan.

I am done with treatment and it’s the best feeling! I walked out of my oncology center with the biggest smile on my face. My nurses gave me a really cool pendant with an angel engraved in it along with a LIVESTRONG bracelet. Lots of hugs and good luck and I of course thanked them profusely.

The support and prayers I received from all of my friends and family was over whelming. I had people all over the world praying for me and I truly believed GOD answered all those prayers. Thank you to everyone who prayed and offered their support and thanks to GOD for answering MY prayers!

Radiation Time

First off I wanted to show off the coolest shirt I own. A friend of mine from BayBimmerz sent this to me. It's been my motto since day one! It also happens to be a a logo that his sister in law is using to sell shirts which proceeds will be donated to the American Cancer Society.

On Friday May 30, 2008 I went in for my simulation appointment. They put me in the PET scan machine to take exact measurements of where they want to do the radiation. After they did the measurements they marked three areas on my body with the tattoos. The three little tattoos are much better than my original thought, which was that they would tattoo the outline of the entire radiation area.

They then made my mask. This was a simple process of putting a wet plastic net over my face and then clamping it down to the table. They let the net dry and harden while clamped to the table. Pretty simple but strange! There are no holes cut out for my mouth or nose so I’m breathing through the small holes in the net. It is also extremely tight on my face, tight enough to leave net lines all over my face.

On Wednesday June 4, 2008 I went in for my first radiation appointment. They place me on the table, clamp down my mask and get me into position using lasers as a guide off of my tattoos. They then use a marker to outline the entire area they are going to radiate. They only mark the front even though they will be radiating from the front and the back. After this initial set up they take some more images so the doctor can make sure I am the exact position he wants me in. It takes four people to get all this accomplished! After all this they begin the actual radiation process. This is over rather quickly; I would say no more than 10 min. The machine starts on top of my chest and then circles around to my back. That’s it! Pretty fast and most of all PAINLESS!

When this was complete I met with a nurse, who happened to be the same nurse that gave me my first chemotherapy! It was cool to see her and talk about all the crap I had been through since I always had other nurses. She went over my side effects again and went into details about the possible fatigue, skin irritation and throat problems I may have. The skin irritation will be just like sunburn and can be treated like one with aloe. My skin will also be very sensitive and I cannot scrub it while washing and cannot wipe it while drying. I need to pat the skin while cleaning and drying. This is only for the area that is getting radiated. I’ll also need to stop drinking ice cold drinks, hot drinks and spicy food if I start having irritation or pain in my throat.
Again since I am only going in for 3 ½ weeks these problems may not occur and I’m really praying they don’t!

Here are some pics of the mask and me on the radiation table about to get RADIATED! The last pic shows the outline they drew of the area they are going to radiate.

Meeting with Radiation Oncologist

I met with my Radiation Oncologist on Friday May 23, 2008 to go over the radiation game plan. This doctor was great; she was very thorough and took the time to answer all of my questions. We started out with staging of my cancer. They have classified it as a stage 2 A cancer. After talking about some of the symptoms I have had she said it may be a stage 2 B but it still does not change my treatment. They have decided to do only 3 ½ weeks of radiation which is great news seeing as I was mentally prepared to take on 6-8 weeks. Radiation will be given on a daily M-F basis and each appt. will be around 30 min.

On Friday May 30, 2008 I go in for what they call simulation. This is where they will make a custom mask for me and mark the area of radiation with permanent tattoo dots. Radiation is given only to specific areas of the body now so they need to make sure they radiate the exact same area each time I go in. The tattoos will make sure they do the same area each time and the mask will make sure I am in the exact same position each time. The mask is a plastic net that will go over my face and neck. Hopefully I can keep it afterwards and wear it for Halloween this year. The tattoos will be tiny dots outlining the area. The area will be down around my heart up the left side of my neck across to the right side of my neck and then back down to the heart area.
Since they will be radiating this area it will hit some organs such as the heart lungs and throat… and poses risk for second degree cancers, such as lung cancer. Naturally, they advise you never to smoke as you are at an increased risk, which is fine, as I have never smoked.

There are some side affects to the radiation but the good news is that the side effects usually take three weeks to start. So I may feel some of these side effects my last week or so but I will most likely be free of major side effects. The possible side effects are fatigue, red irritated skin in the radiated regions, mucositis, hair loss, esophagitis, and issues with the thyroid. The most common effect is with thyroid – causing it to not function properly -If I do end up having a thyroid problem due to the radiation then I’ll have to take a pill daily FOR THE REST OF MY LIFE!

I’m pretty excited to think I’ll be done with this in about 5 weeks. Trip to the bay in maybe 7 weeks and a trip to Hawaii or Florida soon after!!!
Oh and lastly and unfortunately my staph infection is back. So my doctor has me back on Zyvox which is the VERY expensive antibiotic. The total for 14 pills was $2300!!! For me, thanks to insurance I had to pay $50.

ALLLLLL CLEAR!!!!!!!!!!!!!

Today May 22, 2008 I received the best news I have heard in a long time. I got the all clear from my doctor today!!!!!! All tumors have left my body! That’s right they got their asses kicked right out the door. I’ve said it before and I’m going to say it again F*&% CANCER!

It took a good 8 days to recover from the last chemo session. It was a long rough 8 days but once I started feeling good I knew I was done. Then on May 21, 2008 I went in for my PET scan. This is the scan where they inject a radioactive material into you then put you in a scanning machine for about 30 min. I thought I was going to have to wait until Friday May 23, 2008 to get my results but my doctor called me today to give me the good news.

I go in tomorrow to meet with my Radiation Oncologist and discuss radiation. Even though the tumors are gone I will need to go under radiation to make sure they don’t come right back. Once radiation is done I will continue to go into Pacific Oncology every three months for blood tests and to meet with my Doctor. After the first year I will go in every six months. After the second year I will then go in yearly. After 5 total years it is a guarantee that the tumors will never come back!!! The year 2013 can’t come soon enough.

I’m slowly getting my energy and my strength back. I hope to get back to the gym and start getting back to a normal sleep pattern in the next couple of weeks as long as the radiation doesn’t fatigue me too much.

Time for me to celebrate!!!!!!!!!!!!!!!!!!!!!!!!!!!

One more to go

Sorry I have not updated the blog lately. There are no real big or exciting updates. I received chemo last Thursday and feel like crap. I also received the Neulasta shot and that is really causing some major pain in my bones.

The nurses are still having a hard time getting the Dacarbazine to go in without pain. We just cannot get the ratio right the last two chemo sessions. They had to put it in really slow which just made for a really long day. By the time I got home my nausea was the worst it had ever been. I was constantly feeling like I was going to vomit but nothing would come out. Even with the prescription Ativan nothing helped relieve the nausea.

I’ve been receiving the Neulasta shot after each treatment now and that is really taking a toll on me. The pain kicks in about 4 days later and lasts about 4 days. It keeps me up at night and just makes daily life really painful.

The weakness and fatigue I’ve been having lately is just horrible. Especially this past week as I couldn’t do much besides lay in bed. Doing something miniscule as walking up the stairs is so draining, my heart starts beating really fast and I start breathing heavily. It’s a little scary to deal with but I just lay down right after these weird spells and it goes away after a few minutes.

I’ve finally been discharged by the home care nurse only due to the fact that my insurance will not cover any more visits. This is ok with me as my hole in the leg has healed up just fine. The hole in my chest is finally healing but it is still pretty big. Now I have to change my bandages and redo the packing every other day. This is just a bizarre experience to have to do on your own. Not only is painful but it is odd to have to take care of such a big wound like this on my own. I used to always look away when the nurses would do this and now I am forced to actually look at it. Doing this really plays mind games with me. By the time I am done I am just a bit freaked out. The pain is still pretty bad but I just chalk it up to the fact that I have a 2inch hole in my chest and a 2inch hole in your chest is going to hurt.

I’m continuing to lose my body hair and the hair on my head is now growing back really slow. I used to have to shave my head at least twice a week. Now I can go almost two weeks before it really becomes noticeable. The whole hair thing is just strange. Even my 8 year old niece came up to me the other day and said “Uncle Jason, what happened to your eye lashes?” I found it very amusing! Hey like I said before at least it is not painful.

I am glad that I am only dealing with these few things and nothing major. I’m hoping to get back to normal this weekend. Then one more chemo session left.

My doctor said he will give me an entire month off before I start radiation which is great. It will give me some time to get some strength back. Unfortunately he also said it will take a few months before I get an immune system back. So I still need to stay extra cautious and stay germ free.

Things went pretty well after this last chemo (on 3/26). We were even able to get the Dacarbazine into my arm without causing any pain. I think we finally found the best ratio of saline and Dacarbazine so that it is diluted enough to not cause pain. I had the usual side effects up until this past Saturday (4/5) when I started to feel better. I had the same sick feeling the first night and just a little bit of nausea. I did receive the Neulasta shot again so that of course caused some uncomfortable bone aches. I was very fatigued but had no problems with loss of taste or appetite and no flu like symptoms.

Some strange things that I have noticed but aren’t causing any pain are; dry skin, loss of body hair and purple finger nails. I showed my doctor my nails and he said that is perfectly normal. Your finger nails are fast growing cells so the chemo is killing those cells. Once chemo stops then over time they will grow back and look normal again.

The hole in my leg is healing up great. The nurse is still packing it every other day but it is so much better. It no longer hurts and the most pain I have to deal with is when they pull off all the medical tape that is covering it.

Unfortunately, the hole in my chest is not healing as fast. Friday was the first time that the nurse found granulation tissue growing inside, which means the hole has finally decided to start healing. The problem is now when they go to pack it there may be some nerves exposed as the pain is excruciating.

They are sending out a wound care specialist this week to take a look at it so they can try to determine exactly why it is causing pain. Then on Friday I am going back to the hospital to have the doctor look it again. They believe it is either the nerves growing and being exposed or that I am having a reaction to the Aquacel that they use to pack the hole.

The pain is there every day and still wakes me up at all hours of the night. Sleeping seems to be impossible because no matter what position I lay it feels like too much pressure for my chest. There is still some swelling but at least the bruising from the internal bleeding is almost gone.

I have completed my antiobiotics for the staph infection and so far so good. I should know here in a couple of days if the infection comes back -keeping my fingers crossed!!

This Thursday (4/10) I go in for my sixth treatment –which means if all goes well and stays on schedule I will have two left, with the last one scheduled for May 8th. Then on to radiation!

Update

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Sorry I haven’t posted in awhile, I’ve been preoccupied with a couple of new holes in my body. I was finally released from the hospital on Tuesday evening March 11th I left the hospital feeling beat up, exhausted and not much of a positive attitude left in my mind. My doctor still wanted to go ahead with my chemo treatment on Thursday, which worried me because as of Tuesday night I had absolutely no energy. Deep inside I did not want to go to chemo at all. I just wanted a couple of days to rest and feel good again. I knew this would not happen though and I only had one day to get better before chemo.

The doctor prescribed me a very powerful antibiotic called Zyvox that costs $80 per pill!!!!!! Thank goodness for medical insurance. I stayed in bed and rested all day Wednesday trying to recoup some strength before chemo. I was just so wiped out from the hospital stay. I left the hospital with a hole in my leg from the abscess and a hole in my chest from the port. Both of these holes cannot be stitched or sealed in anyway due to the infection. Instead they fill the holes with a material called Aquacel that contains silver and the silver is to help fight off infection. They pack these holes and then cover them with large bandages. The hole in my chest in almost two inches deep and almost two inches wide, it’s the two inches deep that freaks me out. This is the hole that is causing all the pain and discomfort 24 hours a day. I need to have the holes repacked every other day by a home care nurse. The procedure is about 20 min but not painless. Every other time they come they need to measure the holes to see if they are healing. To do this they stick a metal qtip in the holes and poke around until they hit tissue and then they know how deep the hole is. I just hold my breath as they try to do this as fast as possible. The hole in my chest even has a pocket that goes downward so they have to dig into that too.

On Tuesday March 18th I started to have a lot of pain in my right chest around the port hole. My entire right chest was sensitive to touch and felt very hard. The pain was so bad I was unable to sleep at night and none of my pain pills were helping. When the nurse came in the next day she suggested I go see the doctor because I should not have this much pain. We made an appointment to see my surgeon and he said visually everything looks good and he sees no signs of infection. He did an ultrasound on my chest and did not see any pockets of fluid forming under the skin. He then decided that he had to put his finger in the hole and make sure he didn’t feel anything abnormal and you can only imagine how painful that was. But he moved fast and of course did not find anything wrong. The doctor tells me I’m a freak of nature and I should not be experiencing any pain at this point and he has no idea why it hurts so badly. Once again I have stumped the staff at the hospital. The first time was with the whole port issue and internal bleeding. He also said it is not healing as fast as he would like to see but he is attributing the slow healing to the chemotherapy. The pain at this point is back to feeling like I have a 20lb weight strapped to my chest. I have a ton of throbbing pain and sharp pain through my right chest. He suggests I take 600mg Ibuprofen every 6 hours and ice the area since all the pain meds I have been taking are narcotics and not anti-inflammatory. At this point I’m desperate for some pain relief and stick to his regimen. I haven’t been able to sleep at night due to the pain and my movement has been limited. I stick with the pain pills as recommended and it does bring some relief. It doesn’t take the pain away completely but does take the edge off. The doctor now calls me daily for updates and the nurses that come to change my bandages are watching for any signs of infection.

Good news is I was finally well enough to go out to dinner on Friday night with the family and the Verdadero family. Hhmmm Mexican food never tasted so good. On Saturday was Jordan’s birthday and we all went to the OMSI. I had a blast and it was my first venture out in a long time. I was slow when walking and actually had a slight limp from the hole in my leg but it was nice to be out in about. By the time we were all done with the day my chest felt rock hard and the pain was throbbing but it was worth it!

Now all that was just for the two new friendly holes. I did receive chemo on Thursday March 13, 2008. I went into chemo not feeling 100% but definitely feeling better than when I left the hospital. My doctor said my white blood cells look good and my staph infection is looking good. But he still wants me to come in the next day for my Neulasta shot to keep my white blood cell count up. This of course I was not happy about. That Neulasta shot causes the worst bone aches but I must do it to help keep me healthy.

We also talked about radiation therapy. As of now he is thinking at the end of chemo we are going to do 6-8 weeks of radiation given on a daily basis Monday – Friday. Yikes, I was not expecting radiation for that long of time period. At least the side effects from radiation are not as extreme as chemo. I will experience some fatigue, redness around the area in my neck and irritated skin but nothing too bad. There go my plans for Bimmerfest and 5er Fest this summer. Oh well, I’ll be there next year for sure.

Without the port we are back to giving the chemo through an IV in my arm. We get the IV going on my right arm as my left arm is in pain from having the IV in the hospital stuck in it for four days. The pain in my left arm is so bad that I can’t even straighten my arm all the way and the site area is bruised. The chemo begins just fine but in the end we finally start the Decarbazine. This is the drug that gave me reason to get a port installed due to the burning and pain it causes when going in. The nurses now know that they must dilute this drug, put it on a really slow drip and wrap my arm in a heating blanket. This works just enough to get the pain bearable but it still hurts. With this my chemo sessions are now almost 5 hours long. We finish up and I go straight home and right to bed. At around 9pm Becky wakes me up so that I can eat something. I feel like crap but I have to eat. I eat, watch a little TV and go right back to bed. Friday and Saturday are the same. I sleep and only get up to eat. This is also the first time that I experience a lot of nausea and the nausea medication barely works. Finally my Mom remembers an old drink that my grandma used to make when anyone was stomach sick. It’s boiled milk, with cinnamon, and finally a whipped egg white. Talk about instant relief to my nausea. It was awesome. THANK YOU GRANDMA I LOVE YOU! I also experienced something else that I never had before, loss of taste. The doctors told me this could happen and it sucks. We tried everything and my taste buds were just shot. Oh well at least it’s not painful only frustrating. With the pain in my chest, all the chemo side effects and all the pain in my arm from the chemo I was just wiped out this week.

I have my good Saturday but I should have known I can’t go that long without something else coming up. By Saturday night my staph infection is back. I call my Doctor first thing Sunday morning and they get me scheduled to come into the office first thing Monday morning. I make it into the doctor right after the nurse left my house and sure enough they agree that the staph is back. They change my antibiotics to Clindamycin which I need to take three times a day for 14 days. If the infection does not clear up by Wednesday which is my scheduled chemo day then I’m back to the hospital and they will have a surgeon get to work on it. I’m keeping my fingers crossed that the antibiotics work FAST….

Here is a picture of what my chest looked like. No need to explain this one.