Radiation about half way done

Radiation is about half over. So 2 more weeks then I'm done.

I'm having a bit worse side effects than I thought/hoped I would have, but not awful (unless I swallow a crust bit of bread).

Side Effects:

I've already started to turn a bit red in the areas that I receive radiation in, as basically it's like a sun burn.  I've been putting a water based aloe gel on it (remember- NO lotion on it), to keep my skin from drying out.

Mouth dryness.  YIKES.  On of my 2 salivary glands is being irradiated, and while that happens- it stops working.  So I have a weird dry mouth, more so on my right side (the shut down one). However when I eat- no problem, as the salivary glands mostly responsible for saliva for eating are unaffected. 

The dry mouth does make my throat *incredibly* dry and sore when I get up in the morning. I made the mistake of eating a bit of crusty bread this morning, which I could feel tearing up my insides all the way down to my stomach.  So I basically have to take biotene every 4 hours and chew my food into molecules before swallowing   I'm going to ask for a Rx to help with swallowing/eating on Monday.

I feel a bit run down still- just in general, nothing too bad.  Radiation (minus the throat problems) hasn't been *too* bad.

Hair:

All of my hair has finally started growing back.  The sides of my head as well as places where I wish I didn't have hair growing.  My facial hair has also mostly returned to its original color- and rough as sandpaper like before.

Crab Cioppino

Yesterday was Wendy's sisters birthday.  I'm making Crab Cioppino for dinner tonight to celebrate. I might avoid crusty baguette though.

No crab for you

What Radiation is Like + Medical Leave + Hair Update

Radiation:
I'm currently about 1/3 through radiation therapy.  I've completed 5 out of 17 treatments, so a couple of more weeks or so to go.

Radiation is much easier to deal with than chemo, but it's still pretty annoying.

I'm just slightly run down day to day, nothing like chemo- it's more of a subtle-annoying effect.  My muscles in my neck are inflamed from radiation, and feel like I've over worked them without actually doing anything. I'm also starting to get dry mouth, but Biotene should help with that.  The annoying part is that the side effects are constant, and increase slightly after every treatment. Having to come in everyday doesn't help much either.  Starting to need a little more sleep everyday, and Biotene a little more often.  I haven't started to get dry skin yet, but in about a week I should- by that time I should my aloe gel to apply.

Radiation Therapy basically is like this:

• Come in, change into medical gown- top only as that's where I get treatment.
• Lay down on the table, on my custom head rest, they line up the lasers in the ceiling with the tattoo on my chest.
• Weird note: The machine at my hospital is new, it's a combo scanner and radiation machine, so it's different than I was expecting.  It is however very precise.
• Another weird side note: There are two little color monitors on both sides of the opening on the front of the machine, when I enter the room, they bring up my radiation plan, and it brings up my photo on the little screens- just to be sure that the person they're sticking in the machine is who is supposed to go in.
• They fit my mask.  The mask is larger than I thought it would be, mainly because it's supposed to hold still the areas where the radiation is going, so mine covers my head down to the top of my chest. It's TIGHT.  They had to cut little slits into its neck so I could swallow.  I can't speak well, or open my eyes much inside it- kind of looks like this.  Scratch your face before they put it on- it's not coming off for 15 minutes.
• Then when they're ready to start the scan, the techs leave the room, and the giant metal door marked "radiation" closes on the room.
• Once the scan is done- usually 2-5 minutes later, the bed comes out, and the techs make some minor changes if needed after the doctor compares the scan with the radiation plan.
• Then radiation starts.  They leave and the giant door closes again, the bed moves in and it starts.  The bed moves out, then back in as my radiation plan is a 2-part process.
• Then the techs come back in and remove the mask.
• Other note: the machine is loud as hell, mainly from the fans.  When radiation is working, it makes a strange grinding rasping noise, like a sack of gravel being dragged on asphalt in a drumming beat.

Medical Leave:
I'm sending in what hopefully will be my last medical leave request for work, I'll find out tomorrow from my Doctor when I can get the okay to go back to work- looking like possibly the start of June, but it all really depends on my recovery time from not just radiation, but you know- all of it.

Hair:
I've got about 1/8"+ fuzz growing on the top of my head still, and hair in general starting to grow faster.  My facial hair is starting to darken a little bit, but is still pretty blonde-ish, however it's growing at almost a normal rate now, it's not as soft as it was when it was new.

Cat:
Wendy and I made a rosemary brined fried chicken for our late new year's get together with friends, it was amazingly good.

Miles could smell something was going on.

I got my Scotch + Radiation + My Hair

Scotch:

I said I wanted a bottle of Scotch when I was done with Chemotherapy and got some good news, and to share with my friends.

 Indeed I did.

Scotch makes everything cheery.

When else would I be able to justify as super expensive single malt 21 year old bottle of Scotch? (The up side to having cancer I suppose- enabling me to splurge)

Radiation:

Well after getting my tattoo, my crazy mask made (if you're claustrophobic  you had better let them know ahead of time so they can give you anti-anxiety pills, because you won't like it), and my head rest made (I don't get a full body cushion as they only need my neck stabilized)- the annoying part of radiation therapy is that it's everyday for such a short amount of time (30 mins usually, at least for me, for some it's shorter or longer) 5 days a week- it actually takes me twice as long to get there and back than to get the treatment (including the time spent reading magazines in the waiting room (which by the way- they need to get some new issues, I can't read the same Martha Stewart Magazine over and over again).

I shouldn't start to feel the side effects until about another week, and really won't get the full side effects until the very end.

After radiation I need a few weeks to rest, as the side effects linger longer than chemo (which were fairly fast to recover for me).  The after that, I can get my port taken out finally- then recover from that.  Then somewhere around the end of May I can return to work (as it's looking today anyway).

My Hair:

Just now starting to grow on the sides of my head, barely.  The top is a good 1/8", and finally darkened a bit- still lighter than it used to be though.  It's like a muted desaturated medium brown.

my eyebrows are thin, but have grown back at about 80% of where they used to be.  At least they're the right color. 

Strangely enough, my eye lashes have all grown in already- I thought that would be the slowest.  They're the same color as my head hair- which looks a bit odd.

However nothing looks as odd as my facial hair... which is blonde.  No really.  It started out kind of white, only to become a weird light blonde color. The hairs are also super soft, like plush. The facial hair that didn't fall out during chemo (about 10% of it stayed), is the same dark brown black it used to be... so when I let it all grow out, it looks a bit off.

Clean PET Scan

I met with my Oncologist today to review my PET scan from this past Tuesday, and it was clean and clear with no evidence of disease present.  Which is very good.

Per my Doctor:
"The PET scan is very good and exactly what you'd want to see, but it's not a microscope- so we highly recommend radiation."

And he's totally right.  However because of my scan, I will have the minimal amount of radiation needed: 17 days, which should start around Wednesday or so next week (I'll know later today).

So this afternoon I'll have to go back to the hospital and hang out for a few hours getting fitted for my radiation stuff, and have a CT scan.  I'll also know when I start radiation and what time I have to get up in the morning (I did request afternoon times though).

My doctor also showed me CT images taken on Tuesday of my lungs, which still show some residual spots from my pneumonia a few weeks ago. He said it would just take some time to clear, but my breathing was very good and should slowly improve over the next few weeks.

Me: I feel about as good as I did before I started treatment

Doctor: Well I hope not, you had cancer and some tumors before treatment

Me: Well yes, minus the cancer and giant lumps on my face and neck

I can have my port taken out at anytime now, although doing so after radiation would be best.  He's the conversation I had with my doctor regarding that:

Doctor:  You can have your port taken out at any time, unless you're attached to it.

Me: I don't mind it, as long as it's not in me.

Doctor: (laughs) Well you can keep it in a jar on your desk.

Which I do plan on doing.

Birthday + Radiation Updates + History

I had my birthday this past Saturday:

 Wendy made a Chocolate Peanut butter Cheese Cake.

I got my Margaritas.

 Also my fajitas I wanted... which were burrito sized.

Also gifts.

Radiation + Updates:

I meet with my excellent new doctor- a radiation oncologist, and went over a consultation this past Friday. The hospital I go to has a brand new as modern as can be Cancer Radiation Center.  Many people have misconceptions on radiation therapy- it's not like it was 40 years ago where they did full on mantle radiation where they would blast your entire upper body with radiation, as they didn't have PET scanners or CT scanners in the 1950's and 60's. (however, it's still practiced today- but only in extreme cases with very advanced cancers).  It's an incredibly precise field of medicine.

I have my PET scan on Tuesday, which will determine the state of any cancer that's left, which I'll then review with my Regular Oncologist on Thursday, and meet with my Radiation Oncologist that afternoon.  Most likely my PET scan will be negative for disease given with the way I've responded to treatment, which means I'll have 17 days of radiation therapy- M-F every day for about 15 minutes (very short compared to ABVD chemotherapy). If there is still a little sign of disease  then I will get 20 days of radiation.  If there is a large amount left, which neither doctor thinks there is, then I will have to do 2 more months of ABVD chemotherapy and then probably 17-20 days of radiation after that.  Obviously I'd prefer to have no sign of disease.

What I'll be doing when I meet with my Radiation doctor on Thursday will be quite a bit:  

• CT scan, which they'll use in conjunction with my PET scan from before I started treatment, and the one I will have on Tuesday- and they line them up in their computer and the radiation oncology team decides what the best angle of treatment is for the radiation beams.  The oncology radiation team is made up of my radiation doctor, 2 radiation techs, a physicist, and a radiation diagnostic tech.  Which is why it takes 3 days for them to make the radiation plan- as they're pretty precise, I was quite amazed at their level of detail.
• Be fitted for a cradle for my Radiation therapy, it's Styrofoam/foam filled sort of material that shaped for my body/neck, to keep me in one position everyday I have treatment.
• Be fitted for a protective mask, which is made out of a plastic material that they soak in hot water which become flexible, and wrap it around my face until it sets.
• Get tattoos for where they'll need markers for where to aim for during radiation therapy.  They're very tiny blue dots.  Since I had some swollen lymph nodes on my jaw/head, they make the marks on the mask and cut holes out where they need to get at- instead of you know, tattooing my face (as much as I'd like to go back to the office  with facial tattoos).
• I'll be given an aloe vera  gel to put on the areas where I'll be getting radiation.
• Then I can go.
• I should start radiation therapy around the middle of the week around March 20th and be done around mid April.  After that I have to recover from Radiation for about 3-5 weeks, hopefully not more than that. I should also recieve ANOTHER PET scan and see how radiation went.  I won't be deemed officially in remission until the Scan after that- which would be around mid July, but from my reaction to the end of radiation- they can make an educated guess about it.

For newly diagnosed people, as I'm sure you've heard from countless others: radiation is MUCH easier than chemo (although everyone is different).  The hardest part I was told, was that you have to come in EVERYDAY Monday through Friday.  Which is a bit harder if you have kids, or are working, or you know- 80 years old.

I'll be doing about 3 1/2 weeks of radiation (most likely).  The side effects I can expect for my treatment are:

• Week 1: Not much, but the other weeks might start a little early at the end of this week.
• Week 2: Start to get a sore throat/discomfort.  Possibly a slight cough.
• Week 3: I'll have  a bit of dry mouth, Biotene will help.  Because of where I'll be getting my radiation therapy (clavicle, upper center chest in the center, small bit of my arm pit on the right side, and neck) my lower salivary glads will be affected.  Or as my Radiation Oncologist said "kind of a bat-sign symbol shape."
• Last week and a half: The hair will start to fall out from the lower back of my head, as it's too close to my jaw line.  Which is fine, as my hair is about 1/8" right now.  I'll also have  a "sun burn" from the areas of radiation I'll receive. I might have a bit a fatigue  but nothing like chemotherapy.

Other notes:  

• The cancer in my chest is on the right side of my heart next to my lungs, which is good, because if it were on the other side my left ventricle would be in the way- my doctor liked that as it there will be no radiation exposure to my heart.  
• There will be a small amount of radiation exposure to my lungs though- hence the cough, and it will leave scar tissue in my lungs..  However, my doctor tells me I won't notice, as it's a small amount of lung- and even if I were a professional athlete I wouldn't notice the difference as humans only ever use a small portion of their lungs.
• My risk of secondary cancers is quite low, as my stage of cancer is fairly early, and I'm over 30.  The risk for secondary cancers caused by radiation therapy is higher among younger people- which Hodgkin's Lymphoma is much more common (ages 16-24, mostly in men).  It's a higher risk as their chromosomes aren't quite finished forming, where as mine with my age are.  If I do develop a secondary cancer- it would most likely be a skin cancer (in 20 or so years), which would be highly treatable.
• For the sun burn areas, I'll have an aloe vera gel to put on everyday.  DON'T use hand lotions in the sun burnt areas, or scented soaps.  Use only soaps like Ivory, and the aloe vera gel.
• I'll have dry mouth as the salivary glands in that are responsible for the moisture in my mouth will be effected, however the salivary glads that are responsible for saliva while I eat (which are more near your cheeks, and won't get any radiation) will not be affected.
• Also per my doctor: "eating  a bunch of Doritos if your throat hurts is inadvisable."
• I'll have to get my thyroid checked out annually for any problems, which isn't a big deal.
• It's kind of a drag to have to get up and go to treatment every day for only about 20 minutes, the drive there takes longer than the actual treatment.

Radiation really isn't all that scary, also my hair (minus the back bottom of my neck) will continue to grow during treatment.  As with anything- if you have questions about your own treatment, ask your radiation oncologist at anytime- as you're the one paying him (via health insurance or large sums of money from being independently wealthy).

History Time (via blog summary):

Hodgkin's Lymphoma is one of the oldest medically studied cancers in the world.  It's also one of the first cancers that was met with successful treatments.  

Before 1950- it was a 100% fatal disease.  

Through research, radiation was found to kill the cancer cells, and that's when full on body radiation was done- which for the first time patients were becoming cured, although at a rate of about 30-60%.  Patients though experience severe side effects from radiation.

About that time- chemotherapy was being developed, and the first chemotherapy for Hodgkin's was formed.  It was highly toxic and and didn't increase the survival rate much, but lowered the amount of secondary cancers and future side effects.

Then in the mid 1960's in Italy, ABVD chemotherapy was developed.  It's used today in the majority of early to mid Hodgkin's lymphoma patients.  It was in a pretty rough form of treatment,  used in combination with radiation treatment.

Over the years, research has been refining treatment to be less toxic and have less side effects. Today Hodgkin's Lymphoma is one of the most highly treatable cancers, with survival rates very high, and low toxicity.  It's continues to be refined today through medical research... which if you're interested in, you can donate money for research to the Leukemia and Lymphoma Society here, or any other cancer research here as well.  The medical knowledge doesn't just happen, it takes time, bringing highly skilled people together, and money to do so.

2 Weeks off Before Radiation Starts + Feeling Fine

Obviously as I'm posting this at midnight- the side effects of insomnia from my chemo left my internal clock a little weird.  However to be honest, I've always been a night person- or at least I'd prefer to be.

It's been almost 2 weeks since my last chemo treatment, and plus that week of "rest" from my bout with pneumonia- I've got almost 3 weeks of rest under my belt with not chemo.

I feel pretty much 100% fine now, compared to before I started treatment, you know- minus the swollen lymph nodes as well.  My energy is back, and I feel pretty good.  In fact- I'm drinking a margarita now... it's not very good though... I need to work on my mixing skills, it's like drinking sour lime juice that's been accidentally fermented.

The pneumonia is 100% gone for quite sometime now. Lungs feel great, no cough.

I have my consultation meeting with my radiation oncologist on Friday.  No routine blood draw this past week- as I'm done with chemo.  PET Scan next week, and I should start radiation hopefully on the Week of March 18th 2013.

Also- my birthday is coming up on Saturday.  Wendy asked what I wanted, and the conversation went down like this:

Wendy: what do you want for your birthday?
Me: ...fajitas.
Wendy:  Fajitas?
Me: Yeah!  And... Margaritas.
Wendy: Okay... what kind of fajitas?
Me:  Uh.... I-... steak.  I want steak fajitas and margaritas!
Wendy: Okay... I can do that.
Me: Fajitas!

I dunno- I felt like fajitas lately.  I don't even like Mexican food. Except you know- if the person making can actually make good Mexican food- then I love it.

I did my taxes (can you tell I don't have much new to report on?).

Cats:

 A paper bag is all Miles needs I learned.  He sleeps in it- for HOURS, and whatever else goes on in his imagination when he's in it, he just likes to hang out in it. Too smart for his own good.

Elli is more of a cardboard box sort of girl.  She's not very bright- in fact she's dumber than a sack of rocks, but the incredibly sweet. (It took her 3 years to learn her own name- no really it did)

My fried Seth from college, sent me a few bottles of a wine he made.  EXCELLENT Merlot.  If you're ever in central Washington, or at Cost Plus (they sells of their wine there nationally)- pick up a bottle of red, excellent deal on delicious wine.