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

*****************WARNING GRAPHIC PICTURE BELOW*****************
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.

Update on Jay

Sorry we've been out of the loop- it's been the week from hell!
Jay went through a good chemo session two weeks ago after he had his port put in.
He even went to accupunture the following Friday (2/29).

Somewhere after that it went a little downhill. His health was ok, but on Tuesday of last week we noticed some internal bleeding in his right breast- and he went into the ER to have it looked at. They checked for infection, and xrayed to see if the port was in place, and gave him the "all clear" to go home. The docs told him to keep an eye out for any pus coming from the incision place, fever, or any other symptoms indicating infection.

By Thursday (3/6) he was coughing up some blood (he still had a small cough from being ill from the last time), and when he blew his nose, blood as well. Still not much for the docs to get concerned about. He had noticed a small "pimple" on his leg earlier in the week, which he scratched at. By the Thursday it was a golf ball sized cyst and painful.

By Friday (3/7), he had fever and chills. His doc instructed him to go back to the ER.

The internal bleeding had not gotten any worse, but the original incision was letting off a little blood and looked a frightful mess. The cyst on his thigh was drawing conclusions of "staph infection" from the docs.

They say with a depressed immune system its common to pick up anything and everything, especially as staph is always on each and everyone one of us, no matter how "clean" we are. All it takes is an open wound and lack of immune system to really set it off. Jay being in and out of the ER and hospital in the course of a week, and laying in bed for three days did not do any favors...

The cyst was broken by the ER doc, and then a wick was put in to avoid the wound from closing and to let any infection out. Rounds of antiobiotics were given. They admitted him as they decided the port needed to come out, as for some reason his body was rejecting it, and causing further infection.

So, checked in Friday- pain under control, cyst/staph infection under control... port was removed Saturday, Fever and chills returned through Sunday.
Started to clear up Monday (today), however wick needed to be changed.
This was quite painful, as it was a wick made of gauze, which sticks to wounds. They had to over dose Jay on morphine for this, which left him quite sick for the rest of the day.

He's been in and out of sleep, can't eat, and is quite nauseated- and throwing up.
He probably will spend tomorrow if not Wednesday in the hospital to get him back up to speed for his Chemo Thursday.

As for the rest of the fam- the kids have had a couple healthy weeks, and I am just getting over a nasty round of bronchitis and double ear infection, which knocked me on my butt last week (and delayed getting an update to all of you).

Some silver lining- this Thursday marks the halfway point for Jay in his chemo treatment.
As his tumor has been noticeably shrinking, I am really really optimistic that the worst is behind him. I am not sure if they will be doing any evaluating after this chemo session, but we will keep you posted on any progress that comes about over the next week.

His Chemo sessions were slated for 4 cycles (4 months), with two sessions of chemo each cycle, for a total of 8, with radiation potentially happening after he completed his chemo. Let's hope he is well enough to get his 4th chemo session out of the way this week, and on to a speedier (and LESS COMPLICATED!!!) recovery.

Love from Bek and the boys.

PS- as Jay is still in the hospital, please do not call his cell phone!!
Feel free to email us, and I'll get the messages across, or give me a call.
He's mostly in and out of sleep, and not even up for 5 minute chats- and isn't getting much rest anyway, with the constant vital checks every two hours... and the whirring /beeping of all the devices in the hospital.

Port Surgery Complete

The surgery went well on Monday and I’m ready for chemo on Thursday.

My Mom and I got to the hospital at 6:20 am. I was really nervous just for the fact that I have never had any type of surgery before and the lack of sleep from the night before.
We check in and directed to my room. The first attempt to hook up the IV failed and caused nothing but pain and lots of blood in my left arm. The nurses and I joked around that at least this is the last time I have to deal with an IV. Pretty ironic that my IV gets botched when I go in for a port placement!

The nurses finally get the IV going on my right arm with some saline and some antibiotics. At 8am I meet my surgeon and we go over the procedure briefly. I explain to him that I still have a cough from being sick and ask if this can cause problems. He states that if my cough is harsh enough that I can pull the tube right out of my vein so I just need to be aware of my cough and don’t purposely cough hard. That is a scary enough thought to make me not want to cough at all.
They wheel me into the surgery room where it is ice cold. They have me switch beds and thankfully the new bed has a heating blanket. They start hooking up all these sensors to my chest, stomach and legs. Then they shave my chest and start cleaning the area. That’s it…. I don’t remember anything after that.

I woke up in my room and by 12pm -ready to go home. The next couple of days my chest feels like I have a 20lb weight tied to it and moving around, sleeping and especially coughing hurt like hell. But overall I am happy I got the port put it in and anxious to see it in action tomorrow.

Some good news is that the size of the tumor on my neck has gone down considerably. It’s like it is not even there now. I know it’s there and I can still feel it but if I tried to tell a complete stranger that I had a tumor growing on my neck they would think I was crazy. Hopefully the tumors in my chest are going down just as much.

Another trip to the ER meant another stay in the hospital.

Tuesday Feb. 19th was a sleepless night due to pain throughout my entire body. I had a lot of bone and muscle aches along with sharp shooting pain. This kept me up all night. The same symptoms continued on throughout Wednesday and Thursday. I started to take two Vicodin at night and one during the day every few hours. Even with the amount of heavy meds I was still in a ton of pain and unable to get out of bed. Thursday evening it was worse and I suddenly came down with the chills. I knew that this could only mean a fever was on its way. While going through chemo any temp over 99 means a trip to the emergency room. So around 6:00 p.m. I took my temp and just as I thought I was 101. As soon as Becky came home she called my Doc who informed us to get right to emergency. Luckily the ER was not busy and I was put in an ER room right away. They took some blood, did a chest x-ray and immediately got me on Dilaudid injections through an IV. This Dilaudid worked great and would instantly make the pain tolerable. After a couple of hours the doctors said my white blood cell count was up and looking great, although my Neutrophil white blood cells were only at 7%. With this news the doctor admitted me to the Oncology department and got me started on antibiotics. I was given the Dilaudid every 4 hrs even though it only lasted 3 hrs, go figure- so I had to spend that last hour in pain. Finally we decided to try to stagger the drugs and give me the Oxycodone 2 hours after the Dilaudid. While this worked, I became completely useless and could do nothing but try to sleep. Finally this morning [Saturday] I took my last Dilaudid injection at around 6 a.m. and only took the Oxycodone for the remainder of the day. I was finally able to go home this afternoon. I am continuing to take the Oxycodone every two hours. On Sunday if I have any pains I’ll only be able to take Tylenol due to my surgery being Monday. The doctor thinks that the pains are most likely due to the Neulasta shot as my overall white blood cell count on Saturday was really high. So my bone marrow was working extremely hard trying to produce all the white blood cells. He also thinks I got another infection which is what brought the fever on.

I just gotta stay germ free and healthy.

Chemo #2- Full update

I had a couple of really good days before I started my second chemo treatment on Thursday. It felt great to actually feel 100% normal with no flu symptoms and no side affects.

On Thursday morning (Valentine's Day) we started with the IV around 10:30am and they gave me the nausea meds first. During the day a men's acapella quartet showed up to sing to the cancer patients for Valentine's Day. Then they did the "push" drugs which are given through the IV but pushed in with a needle. These are too thick to go through a bag and drip in. And these are the bad ones that give you all the nasty side affects. The first was the Vinblastine, which was clear, and
you can see this in the first picture.














The second was the - Adriamycin, the nasty red one- that could cause damage if it got outside of my vein. They both went in with out any problems.















After the push drugs were administered, they put me on the IV/bag starting with the Bleomycin, followed by the Dacarbazine. When they started the Dacarbazine, I ran into some problems.

It made my whole right arm lock up and extreme pain was shooting up and down my arm from my elbow to my finger tips. I thought this was so odd because I didn't have any problems like this the first time. So they hooked up two bags of saline and let those drip fast and put the drugs on a slow drip to try and dilute it. Then they wrapped my arm up with an electric heating pad. This helped but it was still uncomfortable just not as painful. This process took about an hour and half and I was done with the days treatment by 3pm.

The nurses have suggested that I get a port installed due to this latest issue with the drugs. It will prevent this from happening again and it will also save my veins from any damage that can occur with the treatment I receive. This port basically gives the nurses and doctors unlimited access to withdraw blood or administer the drugs- like having direct IV access without all of the continuous prodding and poking of veins. I have decided to go with this. It is a minor out patient surgery that should take about 4 hours. The port goes in the chest and through the larger veins by the heart. My port procedure will happen before my next Chemo appt. in two weeks.



I left the Oncology center feeling ok, just light headed and dizzy. Becky and I grabbed a quick lunch then went home and I got in bed. I stayed in bed for the majority of the evening and waited to see if the pain would come back like before. BUT IT DIDN'T. THANK GOD! I even had a chance to attempt some meditation based on a CD that was given to me.

I was able to get a good nights' sleep and woke up on Friday feeling good. I went back to my oncology center on Friday to receive a Neulasta shot that will help produce more white blood cells since mine are on a steady decline but still in good shape. This is more preventative maintenance. The downside is this shot makes your bone marrow expand which means lots of bone aches for the next 2-3 days. On Saturday I woke up feeling completely off. I can't really describe how I was feeling. I had no energy at all and some pretty bad bone aches, which I am assuming was from the Neulasta. I spent the entire day in bed and took a couple of naps.

On Sunday (today) I woke up feeling a little better. I still had some bone aches and the jaw pain that I experienced last time was back again. This jaw pain causes my entire mouth to hurt and makes eating a very painful experience for the first few bites. I decided to not take any of the heavy drugs the doctor has prescribed and stick with just Tylenol through out the day. This helps but of course doesn't take the pain away. It's now Sunday night and the jaw pain is only getting worse. I think it may be time to load up on the heavy stuff…

Chemo 2- Finally...

Jay was finally well enough to go through his second chemo, today.
He is scheduled every two weeks, and from last weeks flu incident, he was behind a week. He's now back on track and will receive his third treatment two weeks from today.

More details, and pictures from today later- check back... Jay is feeling good, and writing about his experience.

Latest Updates

Here are the latest updates. For those of you that don’t already know I was admitted to the hospital over night (Wednesday 6th – Thursday 7th) but I’m home now and getting better. All the details are described at the bottom.

Friday February 1, it was another crappy night of no sleep and lots of pain in my right arm. I also woke up to my infamous hiccups and heart burn again. I swear I will take the pain over the hiccups and heart burn any day. These symptoms lasted through out the day and night Friday. Saturday rolls around to the same but my arm pain is going away, guess the steroids are working as planned. Yet I still have the have the heart burn and hiccups. The good news is that I was able to take a 3 hour nap on Saturday trying to recuperate from all the lost sleep. After my nap we met with my brother downtown for dinner and my attempt to have a beer. That didn’t go over so well -I guess the carbonation really irritated my heart burn. Right after dinner I came home and felt like I blacked out. I lay in bed for a minute and next thing I know its morning. I woke up feeling really good having caught up on a solid full night of sleep and ready for super bowl. No hiccups, no heartburn and not much pain in my arm. I am feeling pretty good for super bowl Sunday. But with super bowl comes, chips, 7 layer dip, salsa and all the stuff I probably should not have eaten. By half time the hiccups and heart burn were back in full affect. That’s my own fault for making stupid food choices for the day.

Over the last week I have been dealing with a couple bouts of insomnia and Sunday was just another one of those nights. I woke up at 4am wide awake and unable to restfully lay in bed or fall back to sleep. Monday continued on with the heart burn but thank goodness no hiccups.

Tuesday February 5, proved to be an insomnia filled night but this time I woke up at 2:30 am. Laid in bed until 3:30 am and finally tried to watch some TV and NEVER fell back asleep.

YES INSOMNIA SUCKS!!! I need to find out if this is side affect or my own mind playing tricks on me.

Wednesday February 6, I woke up with a painful chest cough. Didn’t think much of it and hoped it would go away through the day. As the day went on I actually started feeling worse and thought I was just tired and needed some rest. I put myself to bed by 4pm and tried to sleep off the strange feelings and the cough. The next thing I know the body aches and fever kick in like I’ve never felt.

I just lay in bed not sure what was going on and completely incoherent. I think it was about 8pm when Becky and my dad decide it was enough; my fever was too high, I had a screaming headache and could barely speak. They called the doctor who advised that they get me to the emergency room immediately as he thinks my white blood cell count may have dropped.


They get me to the car and to the emergency room where the pain in my head is throbbing and sitting in a chair is just too uncomfortable. We waited what felt like a very long time before they took me back into a room. Once in the room they start with some oral Tylenol, an IV, check my temp and draw blood. Finally the doctor came and agrees to give me good ole morphine. I don’t like the way morphine makes me feel but I know that it will help ease the pain instantly. The nurse readies the shot and straight to the IV comes the morphine. I immediately feel my entire body get hot but relaxed at the same time. The strange thing is that it never takes away the pain that I feel in my head and my body it just makes it all bearable.

I am able to lay there and rest peacefully. After the pain is under control I am off for a cat scan and x-rays. Shortly after that a spinal tap is done to make sure I do not have meningitis. I’ve completely lost track of time at this point but I do remember that when all was done they admitted me into a real room at 3am. I try to sleep the rest of the night even though I am being checked on every two hours and every two hours they are giving me morphine. By morning my Oncologist comes in to check on me and states that all the tests came back ok. My white blood count was off and there are white blood cells found in my spinal fluid but that was expected and the numbers were not alarming. He thinks I just got a nasty virus or flu. He decides to take me off of the morphine and gives me oral oxycodone and an oral antibiotic. The oxycodone has a similar affect just not as harsh as the morphine.

They continue this every two hours through the day. I spent the day sleeping and hanging out with Becky and my Dad as they stayed with me for most of the day. By around 9pm I’m ready to go home sleep this off.

Friday February 8th and Saturday February 9th I just lay in bed and sleep a lot. The headache is still there just not as bad. The body aches and the fever are gone and I just have a few dizzy spells every once in a while. .

Bottom line is while under going chemo you can’t get the flu. Your body does not have the ability to fight the flu after receiving chemo. For obvious reasons my second chemo treatment was cancelled this week and I’ve been rescheduled for Thursday February 14th.

Update on Jay

Not to worry, so far nothing too major.
Came home to Jay with a severe fever this evening and somewhat incoherent.
Couldnt get up, talk, etc. Lots of pain.
He had a cough this morning, and body aches.
There has been lots of nasty flu going around.
Called his doc (as he was supposed to have Chemo Thursday morning) to advise.
He asked that we take him to the hosp. to have white cell count checked out.
Anil Sr. and I took him in and after evaluation, they think his count isn't exactly where it should be, and most likely he is also fighting a virus.

They did a spinal tap to make sure it was nothing serious as bacterial or viral meningitis, and did a ctscan to make sure nothing was going on in his head, as he has a severe headache.

They've decided to keep him over night to make sure he stays hydrated, and his fever is controlled, and that the infection is not bacterial. His oncologist will come to see him in the hospital tomorrow morning. I doubt any chemo will be administered at this time.

Right now Jay needs lots of rest, and some down time...his phone is off- please do not call his mobile while he's at the hospital. Feel free to send your good wishes to him on the blog (God knows he'll be checking it first thing in the morning from the hospital!). If you have any questions, feel free to email and I'll check in with you guys later.

Off to bed.
-Bek

Update...

Good news first- my bone marrow biopsy came back clean!

It has been one week since my first chemo treatment and I must say nothing has been what I was expecting. The side affects have not been easy to deal with, although they have been much different then what I was told.

Friday, the 25th- I woke up tired but feeling pretty good. I took the opportunity to stay in bed for the better half of the day. Midday I started to get the hiccups along with nausea.

The nausea was expected and I have two different prescriptions to help deal with it.
The hiccups on the other hand I just thought were not a side affect and just normal old fashioned hiccups. Shortly after the hiccups started heart burn kicked in!

Now I know everyone reading this has probably had hiccups and heartburn after devouring a bratwurst dog covered in sauerkraut and spicy mustard- now just imagine eating 5 of those dogs in a row and the heartburn that would follow. This went on throughout the day and night. I tried to sleep but kept waking up to feeling like I was going to vomit and hiccup my spleen out of my mouth.

Saturday the 26th, I awoke to the hiccups and heartburn. Now that I am on day two of this I am convinced it is a side affect from the chemo. Both the hiccups and heartburn continued on throughout Saturday. Naturally, I’m all over the internet looking for remedies since my nausea medication isn’t doing anything. I try all the tricks to no success.

Sunday, the 27th I awake and the hiccups, nausea and heartburn are all gone. My energy level is up a lot and I’m feeling pretty good. I guess I got excited too soon. Now, the mouth issues begin, which I was told may happen. First my tongue is itchy and any food that touches it does not feel right.

Then I start feeling pain through out my jaw and it begins to go down into my teeth. This continues through out the day and I decide to just try and let some Advil deal take care of it. Strike one, Advil does not work. A few hours later I take some IBUPROFEN, strike two nothing happens. Then right before bed I take a Darvacet - strike 3 nothing happens. I just give up and go to bed. Tossing and turning, waking up to the mouth pain every couple hours.

Monday the 28th comes around and the pain is worse. Now I can no longer take a bite of any food with out sending pain through out my mouth. By night fall the pain has gone from my jaw and into my head. I can’t sleep and no pain medication is helping.

Tuesday the 29th I’ve had it, feeling miserable I call the doctor. I speak with a nurse who consulted with my doctor and they decide to give me Miracle Mouthwash and Vicodin. They stated that if by Wednesday afternoon I still have pain to call back and they will have me come in.

So Tuesday evening I take the mouthwash and it basically numbs my entire mouth (the miracle mouthwash is a combination of lidocaine, diphenhydramine, and Maalox). This is great as it took care of the itchy feeling I had on my tongue. But the pain is not on the skin – it is deep inside my mouth. I take a vicodin and pray that it helps. Now I am thinking that this pain may be caused by my wisdom teeth. I was told years ago to get my wisdom removed but just never did and never really experienced any discomfort from them.

The nurse stated that it could be that my white blood cell count has dropped and that I am no longer able to fight off any inflammation caused by the wisdom teeth.

An hour or so after taking the vicodin I am feeling worse and decide to take another. This does nothing for the pain. All I am feeling is like I am completely intoxicated - and in pain.

Again I just try to sleep it off with no luck and no sleep.

Wednesday the 30th comes and I call the doctors office and explain the Vicodin didn’t help either so they book me for Thursday morning. I just deal with the pain all day Wednesday with out taking any pain meds. I guess not taking any pain meds caught up to me that night as I had the worst aches and pains all night long. Everything from my back, to my elbow, shoulder and even the pain from the bone marrow biopsy came back. It was by far the worst night since the first night of chemo. I took a Darvacet at 4am hoping it would just knock me out for a few hours.

When I woke up this morning, I had sharp pains all though out my right arm. I had no idea what this was but I was on my way to the doctor anyway. When I got there he was worried that the pain in my arm may be a blood clot which can be very bad. So he sent me in for an ultra sound. They took some more blood to check my white blood cell counts and gave me a stronger pain medication that is a steroid called Dexamethasone. The ultra sound came back with no signs of blood clots. So the doctor said it could be that the tumor cells are breaking down and going into my blood stream. Since the tumor is on my right side and it is my right arm that hurts it seems logical.

He also said to remember that they are injecting me with poison that kills both good and bad cells. So this may just be part of the treatment process especially since the pain in my arm is the same arm they injected the chemo in. But he is glad that I came in and he wants me to continue to report everything that I am feeling. So I have taken the steroids this evening and I am hoping I can get some good sleep in. The pain in my arm is pretty severe, the pain in my jaw has gone down a bit and so has the pain and aches I had through out the rest of my body.

It’s hard because as soon as some strange side affect goes away another one immediately kicks in. This all plays a big role in taking that positive attitude away that I started with. I’m going to try my hardest to stay positive and all your love and support really does help. I love reading all the comments so keep em coming. I have one more week before my next treatment and I hope it is a good week with little to no problems.
It’s super bowl weekend I need to be able to enjoy it!!! Pats over the Giants by 20.

Chemo Day 1

Wow- what a day. Started off feeling great at 7am and ready to take on the chemo. After getting the boys to school and Jaden to Pam’s, Becky and I went straight to Pacific Oncology where we thought the chemo would begin. After taking my vitals I met with my Doctor to discuss today’s happenings.
He asked- How did the PET SCAN go?

Well I never had one and I was still waiting for his office to make the appointment. He says they can’t proceed with out getting the PET SCAN first. He said he doesn’t need the results before he can start he just needs it done because after the first round of chemo everything will already change. So after he strong armed the nursing staff they called clinics in Portland finally finding someone that could take me in right away. The problem with this is that a PET SCAN requires fresh radioactive material - so I needed to hope someone else had cancelled in the last 24 hours. Luckily after some searching by the nurses they found an opening at Meridian Hospital about 20 min away.

When I get to the room they immediately start an injection of the radioactive material which they will let flow through my body for 1 hour before they can do the scan.

Feels quite strange knowing that your body is now emitting radioactive waves. During this hour they kept me in a small room and all the walls and doors to this room were lined with lead plates. So at this point all I’m thinking about is how bad is this for me and everyone else?

The nurses assure me that I am fine and not harmful to anyone else or to my self. After my one hour is up they place me in the PET SCAN tube with my arms over my head for 20 minutes. Talk about an uncomfortable position to lie completely still for this long.

When it was all said and done I had to rush back to Pacific Oncology and be there by 1pm. If I was not back by 1pm then they could not administer the chemo today. And there was no way in hell I was going to wait another 24 hours before going to treatment. I had to really psyche myself up today to go in and did not want that feeling to go to waste. Becky and I hustled and made it to check in three minutes before 1pm.This time I was able to get in, skip vitals, and get to it. The nurse administered the IV drip first with an anti-nausea medication. After that completed, the first treatment began. The Chemo medication I am on is ABDV- four separate medications given consecutively during treatment, two through the IV drip, and two through injection (also through the IV).

All this time I am feeling great and ready to take in this fight. Becky left to go back to work for a meeting, so I just lounged around watching Spiderman 3 on Jai’s PSP.

After that I sat with the nurse and discussed side affects and what to do with them all. At this time we also discussed staging. The reason was- based on the PET SCAN, the doctor did find more cancerous tumors in my chest area. This does not mean that the cancer spread like it does in metastatic cancer it simply means there are other cancerous tumors in my lymphatic system. This means I have been elevated to a Stage II but this will not affect my treatment in anyway. This does not lesson the chance of being cured in any way. The doctor did confirm that I will do radiation once we have completed the 4 chemo cycles. Staging will be complete based on the impending results from the bone marrow biopsy. Should that be clear, my stage will stay a II... if there is any sign that the cancer has reached the bone marrow, then that will alter the stage further.

After letting the first two drugs drip slowly into my system the nurse then took a giant syringe filled with red liquid. This is the BAD stuff. This was the stuff that will cause most of the nasty side effects and it’s so bad that if for some reason the liquid leaves my vein it will immediately cause severe damage to everything it touches. Yeah- that scared me but all I can do is sit there and make sure I don’t feel a burning sensation. After that was done they did one more drug through a syringe and I was done for the day. Four hours later.

I left the building feeling good and starving. We got to Pam’s house after picking up my prescription nausea meds and hung out for a few minutes.

Not long after being there I really wasn’t feeling too hot. So we left, I went home to walk my dogs and make some phone calls. Immediately after my last phone call I got hit with the worst body aches and chills I ever had. I was not expecting this at all but with this type of treatment I don’t think you can be fully prepared for what may come your way. I loaded up on the layers of clothes, blankets and cranked the heater. Nothing worked I just felt horrible. My hands were like ice, my head felt hot - I just laid there in pain. I drank some warm tea and tried to eat some soup. Nothing got me warm. Finally I started to hyperventilate and panic. Becky helped me until I was able to calm down.

Once I got myself under control I took some Ativan for anxiety and nausea. This also makes you sleepy which is exactly what I needed. Shortly after, I was able to fall asleep for about an hour. Once I woke I was HOT. I kicked off the blankets, took off all my layers and just sat there. I felt like I just got hit on every part of my body. I was weak, tired and could barely speak. But after some time I did feel a little better. I ate some food and drank a lot of water. And now of course I feel well enough to type this blog.

Now, my body is just really weak and mentally I am in shock. I did not think I would have those side effects so fast and so hard. At least now I know what to expect the next time around and let’s see what tomorrow brings me.

Bone Marrow Biopsy

My bone marrow biopsy is complete and if I ever hear a doctor say the word biopsy again I am running away to Fiji! Two biopsy’s in two weeks just plain suck. The first was a biopsy on the tumor straight through the neck, which required the use of a “gun” to extract 8 samples of the tumor. This “gun” seemed to be an extremely violent way of removing the tissue and would send pain surging through out the neck every time he pulled the trigger. All 8 samples had to be from different sections of the tumor, so watching a doctor strong arm a giant needle through my neck was unpleasant in itself. Then tack on the amount of pain and discomfort both during and after?? No thank you.

Yesterday, I had the bone marrow biopsy. This was done right at the base of my back and they extracted the marrow from my hip bone. The initial local anesthetic was the most painful part. Then just tons of pressure is all I really felt, until about halfway through the procedure I felt sharp pains going through me. So the doctor stopped to add even more anesthetic. Unfortunately, they had a mirror on the wall and I was able to see the doctor twisting some strange metal object into my body. Turns out he is using what appears to be a wine opener but instead of a corkscrew shaped thing it is a hallowed out metal tube with very sharp edges to twist into my bone. Of course part way through the procedure I hear the doctor tell the nurses “oh look at this, I bent it” ya that was really comforting. So they get a fresh one and finish the job. By the time I got home the all the anesthetic was gone and I had to take some pain meds they prescribed and lay in bed the rest of the day but when you got a sore rear, there is no comfortable position.

CT Scan pic and thank yous

So I was bored today and decided to try and post a picture of an image from my ct scan. This is the best one I was able to take with my new fancy camera I got for Christmas from Becky. You can clearly see the tumor that I've circled.

I also wanted to say thank you to everyone for all the thoughts, prayers and support you have given me. I love you all and I want everyone to be ready to celebrate with me when this is all over with. Let's say Hawaii??? I'll need some sun after this, gotta work on my tan a little.

First Meeting with Oncology

Today Jay met his oncology doctor, Dr. Karimi, and reviewed the upcoming treatment plan. The treatment plan will begin with 4 cycles of Chemo (16 weeks- each "cycle" is 4 weeks). During one cycle, Jay will receive two treatments of Chemo (so, every other Thursday for four months). This is an aggressive plan in which they expect to see his tumor dissipate, and then decide at the end if they will pursue a round of radiation, or additional cycles of Chemo.
This plan may also change after a few other questions have been answered for Dr. Karimi- Jay must be tested for heart disease to give an "all clear" to the type of Chemo they will administer, another CT scan to help determine staging as well as a bone marrow biopsy next week to make sure that the cancer is still confined to the lymphatic system.

Jay's chemo begins next Thursday.

The Oncology practice is simply that. The entire facility is dedicated to cancer treatment, it operates separately from any other hospital or medical practice. The Oncology Center is Pacific Oncology and is close to our home, the offices of the other doctors Jay has been appointed, and the best hospitals in the Northwest.

Today Jay toured the entire facility, and did a walk through of what his treatment visits would be like. Entering the facility, he checks in and is examined before his treatment begins to make sure his vitals are good, and his weight and height are noted for accurate dosing of the Chemo.

This is where he will spend the next 3 hours.
The Chemo is dosed intravenously, and as long as he is up to it, he can be mobile in the facility, or sit amongst other patients and socialize, bring books, games, iPods, etc. and relax in the lazy boy chairs that face a semi circular wall of windows. There are also several private rooms for other patients that may require them, with depleted immune systems, or simply advanced stages of cancer that wish to receive treatment privately.

Once the Chemo has been administered completely, Jay is set to go home. The next few days after a treatment will be tough, he'll be tired, possibly nauseous, maybe loosing hair (oh wait- that's already covered- as Dr. Karimi pointed out today)...but on his way to recovery.

The news

So in a matter of days it seems that the news has spread across time zones and oceans.
Over the last few days Jay's been on the horn it seems every few minutes relaying news to family members and friends, so he thought with all the flurry of information, we should keep a blog of everything happening. This way despite miles, bodies of water and time zones you'll all get accurate information on Jay's status.

To recap what's already happened, Jay has been diagnosed with Hodgkin's Lymphoma. We've learned of all cancers, this is the one that's most ideal to have, as it has the highest survival and cure rate. Some facts about HL can be found on the Mayo Clinic web page.

Jay noticed a small lump developing on his neck- which he attributed to a rotator cuff injury from earlier this year. Thinking the small lump was just muscle mass or scar tissue, he wasn't concerned about it, until he finally felt some pain in it over the holidays. Other symptoms that he had that seemed circumstantial at the time were weight loss (we know what a gym nut he is) lack of appetite, night sweats, and itchy skin.

Jay went in on Tuesday (Jan. 8) for an appointment, and was immediately rushed through the varying tests and came back with a CT scan showing a quite large tumor in his neck.

Monday, January 14 Jay underwent a biopsy for final confirmation, and today we received those results. Thursday, January 17, Jay and I will meet with his oncology team to begin discussing treatment options ranging from Chemo, to combination treatment of Chemo and Radiation. Treatment can last from one to five years, and the doctors are all very optimistic that while treatment will take a significant toll on his energy and health, he will come out top notch.
As Chemo weakens the immune system while fighting the cancer, please keep that in mind if you're planning a trip to visit, and we'll try and coordinate visits between treatments and when his immune system is at its prime.
As of now, we ask that you simply pray and send us your good wishes; no tears. Positive mind set is crucial, and with Jay being the stud he is, there is no reason he shouldn't beat the sh** out of this with flying colors.
- Jay and Becky 1.16.08

Biopsy

Jay went in Monday at 8:15 for his biopsy.

The biopsy was more painful that expected. The tumor size is estimated slightly greater than 5 cm however is amorphus; not completely circular. It is located between two major arteries.

The picture was taken after the appointment outilining how large the tumor is, and the second set of lines showing that it should not exceed that size after the biopsy (this would indicate internal bleeding/swelling) The second picture shows the puncture location.