Started Chemo 1 year ago today

1 Year Post Chemo Update:

1 year and 3 1/2 weeks ago I was diagnosed with Cancer at Swedish Hospital in Seattle. 

1 year ago today I started chemotherapy for stage 2A Hodgkin's Lymphoma.   

8 months ago I started radiation therapy.

7 months ago I was in remission.

4 months ago I went back to work.

1 month ago I got my 1st barber shop cut.

(If you were wondering my hair grew back completely around 2 months ago- it's still a weird texture though)

For the most part, how am I doing?:

• Super fatigue when I exert myself.
• Hair is growing a little weird where I had radiation still.
• Hair texture slowly returning to normal. Still weird and wavy.
• Weird sensations around my neck where I had surgery and my port located- largely due to having radiation muscle fatigue in those places, and the fact I used to have a medical device that ran from my chest to neck in my for almost a year.
• New crown put in on one of my teeth.  The radiation really trashed it, and I couldn't get it pulled due to radiation treatment on my jaw bone. Took about 6 weeks to get it in there, because of the radiation treatment I had to see a specialist etc.

I get tuckered out fairly easily.  How easily?  Walking to the bus stop feels like I'm going to drop dead from a heart attack.  It's probably a combination of recovery from treatment to my heart and lungs, and the fact I sat on ass for so long and am really out of shape.  Using the 3 day weekend to start exercising again- ever so lightly at first for awhile.

Hair grew back where I had radiation treatments about 4 months ago, but a month ago it just stopped for what ever reason. It seems like it's slowly starting to come back again.  It's given me a weird half moustache again.

Although it's really nice to have hair again

I had a 6 month follow up post chemo which went well, and had a CT scan that was clean.  I have another appointment as a general check up in about 3 weeks.

Otherwise minus the fact I can't speed walk everywhere anymore like I naturally do- I'm doing quite well, and minus the hair cut look pretty much like how I did a year ago.  I could just stand to get some exercise... slowly.

The cats are pretty bored now that I'm not home all day everyday

Hair Cut (again)

This is my last weekend before I return to work, and I had my friend Omar cut my hair again, as he was the one who gave me the buzz cut initially way back when I started treatment.  I started to actually get a weird half mullet in the back- it was time.

 Before then after.

As my oncology nurse said to me last time I was a few weeks ago:

Nurse: ... hey it's Dennis!  I hardly recognized you with hair!

Me:  That's because I have eyebrows now.

My hair at my radiation bald spot is JUST starting to grow some fuzz back there- so in about a month or so it should be back to growing normally.  It was the area that got the brunt of the radiation, which takes about 4 months to grow back.

For haircut payment I made mint juleps.  Luckily it was one of the 15 or so actually nice sunny days in Seattle.

They might be a little nervous with me gone 40 hours a week... or maybe glad I'm not there all the time- I can't tell.

Clean Bill of Health + Return to Work

I had my final treatment related doctors visit last week, which my doctor told me "I don't think there's anything wrong with you now."  Which is pretty good news.  I still have to be monitored for the next 5 years carefully, to be sure the cancer doesn't return- which is unlikely.  Although I have to have a PET or CT scan every 6 months for the next 2 years, and once a year for the 3 years after that.  Then at the 5 year mark, I get to announce that I'm "cured."  Only 4 1/2 more years to go for that one.


I'm running about at 95% capacity right now.:

• My lungs have recovered and are strong again.  
• About 98% of my taste is back.  I still have a slight dry mouth, which should get better sometime in the next 3-9 months slowly.
• Almost all of my fatigue is gone, although I get winded pretty easily.
• No longer have dulled tingling in my feet from nerve damage from chemo.
• I have a full mustache now.  The beard on my right side is just now starting to grow back.
• STILL have a huge bald patch on the back of my head, which should start to sprout hair some time in the next 2 weeks hopefully.
• Fingernails are growing a full speed along with the rest of my hair.
• I'm ALMOST done peeling in the areas where I got radiation.
• I have to use sun screen on the areas where I had radiation, pretty much forever now- as that area is more susceptible to skin cancer.
• Neck muscles are still sore and inflamed from radiation.  This will go away in the next 3-9 months.
• I'm due for a hair trim soon.
• Teeth... are not so good.

I'm pretty sure I have an abscessed tooth unfortunately, from radiation.  Radiation does a number on the teeth, and dry mouth doesn't help.  The radiation also changes the composition of saliva for quite a long time as well (again 3-9 more months hopefully), so it's not the best environment for teeth. I most likely will need a crown or an implant for that tooth (!), and lots of little repairs to existing teeth on the side of my face that got the treatment.  My teeth like myself, didn't like getting radiated.  My dentist will love collecting my insurance money when I get the work done.  Hopefully I can get it scheduled before I return to work.

I return to work July 1st!  I need to attend new employee orientation (which I normally give).

Wendy and I celebrated her birthday with a hike to Mt. Rainier.  It was... slow, and pretty short, as I was winded quickly, but still a hike. Sitting and laying on ass for 8 months during treatment didn't help my hiking regiment.  To be fair I hadn't hiked since last September, and I did have cancer.

I have hair (and eyebrows).  Just don't look at the back of my head for a few more weeks.

Port Removed, Taste + Hair + Rad Burns, Work

Ooops, been awhile.

Port Removal:

I look quite a bit more cheery getting it out than having it put in.

I had my Medical Port removed 2 1/2 weeks ago, and recovery having it out vs having it put in is quite a bit easier.

I wasn't allowed to keep it because of biohazards, which is understandable.

When I had it put in I had a bone marrow biopsy just before it, so I was extra drugged up.  This time though I wasn't and I spent about 80% of the time having a conversation with my doctor while he was taking it out. I stopped talking because I figured he was busy and I shouldn't be bothering him.  I had pain meds, and couldn't feel anything, but I could still feel pressure- so I could feel the tugging, cutting and pulling during the surgery.  Weird.  He did ask me if I'd like to see it, once it was taken out- he then shoved it about 2 inches from my face.  It was dripping with blood and was covered with bits of me, I think I replied "huh, neat."

I won't have to get the stitches taken out, as they're internal and will dissolve soon.  I still have a little patch of glue over the incision which should break apart in the next couple of weeks.  Where the port bump was located, is a little lump of scar tissue- and if I look carefully I can see about a dozen or so needle marks from when my port was accessed over the last few months.  I won't put a picture of that- it's gross.

Taste + Hair + Rad Burns:

My sense of taste in the past week has returned about 85-90%.  Artificially flavored things no longer taste like phosphorus.  The only thing I'm missing taste-wise would be more complex tastes, I can still taste complex things, but I can't quite get all of the subtle flavors... you know  like that really expensive Scotch I bought.  Ah well, I still have about half of it, and the rest of my tastes should return in the next 2-6 months slowly.

Everything though has a weird super saturated taste to it.  Which is pretty good- savory things taste amazing,  and fruits taste like candy.

My 80's hair cut on the back of my head is still there though, no sign of starting to grow yet.  All of my other hair is growing nicely, and pretty-much-almost-the-right-color which is good enough for me.  Although I hope it starts growing in the next 5 weeks before I return to work.  

My facial hair though is just now starting to grow back... blonde again.  Which should get to the right color in about 3 weeks or so.

I'm still recovering from the radiation "burns" though.  My skin along my neck mostly and partially my chest are very dry, and a dull greyish patchy color.  The skin is just now starting to die, and peel off.  I'm supposed to avoid direct sunlight for the next few months to allow it to heal... thankfully in Seattle, sunny days are few.  I spent my first day outdoors for a large amount of time a few days ago:

Bald patch is in the back.

Return to Work:

I finally have my return to work date:  July 1st 2013 Monday.  I had thought about trying to return mid June, but that was a little too hopeful in thinking.  I have 2 "final" doctors appointments mid June, and a regular CT scan then as well. By "final," I mean last appointment for my  course of treatment, a follow up ot treatment ( I still have to have 4 1/2 years worth of routine check-ups).  I have my 1 month follow up with my Radiation Oncologist who will check my skin, etc to see how I've recovered, and my my regular Oncologist who will check my lymph nodes again as it's been 3 months (!) since I finished Chemotherapy,  to see how my recovery is doing at that point and if there are any complications lingering from treatment.

Hopefully my weird bald patch from radiation grows back by my return to the office.

For my day job, I'm the person at work who meets with new employees and sends them to dreadfully boring training classes- I think I need to attend new employee orientation, as I haven't been to work in 8 months come July, since my diagnosis and treatment.  I hope they go easy on me....

No cats allowed at the office

Radiation Recovery + Port Removal + Future

Wow- it's been about 3 weeks since my last post.  Mainly because not much has happened since I finished radiation, other than SLOWLY recovering from radiation therapy.


Radiation:
I still have my mask, which I use to scare the shit out of little kids in my neighborhood:

 with fava beans

 just kidding... maybe

My hair is still recovering nicely... except for that radiation bald patch I have.  The doctor said it would take about two more weeks until it starts to grow back slowly.

  

the1980's are back

My skin held up fairly well to radiation, I'm STILL a bit "burnt" from it, but it's healing nicely.  I'm FINALLY able to taste things though.  For the first 2 1/2 weeks after I finished, I couldn't taste anything.  Sweet things tasted bitter, and my mouth was incredibly dry.  However my tastes have slowly started to come back- I can kind of taste sweet things again, and non-complex flavors.  Strangely, red wine tastes like nothing at all- like thick water, while beer tastes for the most part fine.  I did notice that if I ate any processed foods or non-naturally flavored things- I could only taste the artificial flavoring... phosphorus isn't a very appealing taste.  However for naturally flavored things, I can for the most part taste.  I should take about another month for most of my taste buds to come back- well technically grow back, as they were pretty much burnt off from the radiation.  For more complex flavors though, like dark chocolate and fine wines (and sadly that very nice Scotch I have)- will take 3 months to a year to fully return.

My neck muscles are still pretty inflamed, it basically feels like they've been over worked- all the time.  It's from the radiation, and should hopefully start to dissipate more in the next month.

Oh yes- I also started shaving again when my facial hair grew back... only to have most of it fall out because of the radiation.  So I have to shave my half moustache for a while now:

 at least it's a quick shave

My radiation recovery is happening a LOT slower than I had anticipated, but my still hopeful return to work will be mid to late June.

Port Removal:

I had my port flushed for the last time about a 3 weeks ago- and said goodbye to my oncology nurses (who I admittedly will miss).  It's supposed to be flushed once a month if not used- so rather than do that, I'm getting that sucker taken out.

My surgery is scheduled for this Monday May 6th.  Wendy is giving me a ride home after the procedure, and afterwards I'll probably crash for a few days and sleep- it wasn't particularly fun getting it in, and probably won't be getting it out.

I have to remember to ask them if I can have it once it's out (since I did pay for it and all).

Future:

In mid-June I have my FINAL treatment doctors appointment, with my regular oncologist and my radiation oncologist.  I'll get a CT scan, and see if everything went according to plan- which it already looks like so.  So from post port removal until then- I'm supposed to just relax and take it easy for the rest of my sickcation.

I'm getting tired of hanging out with you too cats

All Done (for the most part)

Today I had my last radiation therapy treatment, and my last visit to the oncology nurses.  Yay me.

I also got to take my mask home:

I'm glad to finally to be able to not have to wear that on a daily basis.  When it's clamped down, it's pretty skin tight, it usually leaves the honey comb pattern on my face for a bit after.  It needs a wooden plaque, and some antlers- I suppose I also need a fire place to put it above as well.

I had to have my port flushed one last time (supposed to have it accessed, or flushed once a month).  In a month I'll have it removed (and added as another cancer souvenir) after I get over the worst of the radiation side effects.  It was good to see my oncology nurses one more time in the chair.

After that- I rest for a month and a half or so to relax, recover and have my body return to normal.

I do have a mid June appointment with both my oncologists, just to see how everything has gone- but more so to check up on my health to make sure my recover is going well.  It's looking like I should be back to work around middle/end of June now.

I still can't taste anything, and probably won't for the next month, as it slowly comes back. Because of the way I was situated, I lost part of my new hair on the lower back of my head:

That sucks.  Although- most everywhere else is growing well.  My facial hair I noticed, has stopped growing on the right side of my face because of the radiation... but still grows on the left side.  So I have to shave half of my face now.  At least it's not blonde anymore.

Cats:

They do in fact like each other.

Last Radiation Treatment

Tomorrow is my last radiation treatment.  Yay me.

Yesterday they reduced the radiation field along my right armpit and left clavicle (as there wasn't much activity there to begin with), and stopped radiating my throat.  With the 2 days rest from the weekend + no longer having my throat radiated, I can finally eat things and not have it be painful going down (mostly).  I do have quite a bit of dry mouth though.  It should take about a month to get better, about 1 year to go back to normal (or less).

Oh yeah: I can't taste anything.  Everything has a weird neutral bitter iron/bloody taste to it.  Except for tomatoes.  They just burn my mouth like they're fire-peppers. Coke tastes like fizzy metal.  Bread tastes like bitter dirt with some yeast in it.  Taste should gradually come back over the next month or so, with complex tastes returning within 3 months.  So in about 3 months, I can enjoy that Scotch again to its fullest.  However now, it's not much fun eating or drinking, more of a chore.

Me:  I think I have thrush.
Doctor:  Let's see... hmm, that looks painful.
Me: Yeah.
Doctor:  It's probably not thrush though, it's probably just from the radiation.
Me: Great.

I'll get to keep my mask after tomorrow (probably in my storage unit as it's kind of big), I'll put up a picture of that next time.

Here's a photo of the crab Cioppino soup I made the other week that I previously mentioned. It was JUST as my throat and mouth started acting up from the radiation:

The crab was no problem to eat, but the tomatoes kind of burnt like fire going down.

I'm also getting my port flushed tomorrow, by my old oncology nurses after my radiation treatment.  I kind of miss seeing them.  I have to have my port flushed once a month or used once a month- it's been awhile.  In about a month or so after I've recovered from radiation a bit more I'll have it taken out (and recover from that) with maybe one more port flush in there.

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.

Done with Chemo + Radiation + Updates

I finished my last treatment of chemotherapy this past Thursday.  Yay me.

The pneumonia is pretty much gone now, and my breathing is at about 95% of what it was before, soon to be 100%.

I'm currently recovering from my last treatment, with the usual side effects: lack of taste, fatigue, weird numbness in my toes and fingers, and still pretty bald.  Although- this is the last time I have to go through those.  I should be fine in a few days from now.

All in all, I did VERY well with my side effects from ABVD.  I was fortunate enough to not have ANY nausea, always had high white c ell blood counts, and minus the pneumonia didn't have any secondary illnesses.  Yay.

He's getting tired of me being at the house so much, he wants his personal space.

My New Timeline:
I get 1 week to recover from the last treatment (which I'm in the middle of now), plus 2 weeks to recover in general from my 4 cycles of ABVD before I start radiation therapy.

I meet with my new other Doctor on March 8th 2013, a radiation oncologist, for a consultation.

I have my PET scan (finally) on Tuesday March 12th 2013, and get the results from my regular oncologist Doctor on Thursday March 14th 2013.   Which hopefully will show no activity.  With the way I've responded to treatment, that's most likely the case as my last swollen external lymph node I had disappeared about 2 months or so ago.  If there is a small amount of activity- that's fine as well, as the radiation therapy will take care of it.

I should start radiation therapy sometime around the week of the 18th of March, and it runs for about 4 weeks, 5 days a week every week.  The appointments however are a hell of a lot shorter than chemo.  Chemo lasted 3-4 hours, while radiation should last 10-20 minutes each, or as my oncology nurse said "it will take you more time to drive there than be treated."

After that, I get another PET scan, however, I have to wait 2 months before I get it, as the PET scan relies on radioactive markers to be able to visualize any activity (by way of drinking the more disgusting "milk shake" I have ever tasted), and the radiation therapy throws it off.  So some time in the middle of June will be my last PET scan for treatment AKA my first regular PET scan for the next 5 years.  I have to have 1 PET scan every 6 months for the next 2 years, and 1 PET scan a year for 3 years after that.  If it all remains clear during that time I'm considered cured.  Yay.

Hopefully at some point around the middle of May I can return to work, and gleefully send more people to be miserable at safety training classes.  Yeah, I'm that guy.

(I'm also totally buying that really expensive Scotch for when I'm labeled "in remission" not when I'm labeled "cured" as I would rather have the Scotch now than 5 years from now... I'll just buy another bottle in 5 years anyway, can never have too much single malt)

Radiation Therapy- Do I Need it?
Many people have asked me this.  Also many people who are newly diagnosed will ask this as well.  My answer is:  YES.

Chemotherapy kills as much of the cancer cells as possible, not just trying to make you feel lousy.  However- you have have to have ALL of the cells destroyed.  Radiation is sort of/kind of "mop up" after chemo.

A lot of Hodgkin's patients wonder why they have to have radiation after finishing chemo with a clean PET scan that shows no activity of disease. The reason is that a PET scan is a great diagnostic tool, but has it some short comings.  It can show no activity of disease, but that doesn't mean there aren't some small amount of cancer cells present, and it can be notorious for false positives.  You don't want to do chemo, and skip radiation if there are a some cancer cells still around, as they could eventually continue to divide and grow, making chemo kind of pointless.

Radiation therapy is the "we need to make sure we got it all" treatment.  And really- that's a good thing.  You don't want this to pop up again later.

Also please note: Not everyone gets radiation therapy.  It all depends on stage, and other factors.  Some people if they are in a very early stage, ONLY get radiation.  For people who are in a very advanced stage, they have a long cycle of ABVD and even more radiation. Some people are in earlier stages like mine, and have long cycles of ABVD and no radiation as well.  If for any reason you're wondering why your oncologist is doing or why they decided to pick whatever for treatment- just ask, you'd be amazed with the answers you'll get if you just simply ask.

My Hair (or lack thereof):
So with my extra week of rest before my last treatment due to pneumonia, my hair actually started to grow back.  Mainly my eyebrows (which are looking kind of thin, but are still there).  I have a bunch of tiny new eyebrow hairs growing... and they're a medium brownish red color.  Which is normal, when your hair grows back it usually is a slightly different color and texture than before- which will last anywhere from 6 months to a year before going back to the way it was.  The initial texture I'm told is kind of like a weird baby hair softness.

There really isn't anything you can do to speed up the growth, and "everyone is different."  You're basically genetically pre-disposed with how fast your hair will grow back.  With some people it grows DURING treatment, some takes 2-4 weeks to start growing, and others take about 2+ months.

Another weird thing is I have about 30 or so hairs on my head that never fell out and kept growing all through treatment, albeit growing about 1/4 the rate my hair usually grows at. They all have a strange thickness to them.  They have a "wavy" thickness, it will be thick then thin repeated a few times, the thin parts are from when I had ABVD treatments, and the thick parts are from when I was recovering the week after.  It's like a weird tree-ring of memory.

I've also got a weird white peach fuzz of hair slowly growing on my head.  We'll see if they match my eyebrow color in a few weeks.