Happy Holidays

Not a cat- but close enough.

Half Way Done with Chemo + Schedules + What I'll do When Everything is Done

It's been over a week since I posted, so here's a long one. Also all of my links from now on open in a new tab/window to be less annoying (or more annoying, I'm not sure which is which).

Halfway done with chemo today!

I had my 4th treatment today/finished 2nd cycle.  I have 4 more treatments/2 cycles left to go.

After my next cycle, I'll have a  PET scan to determine how well I've taken to treatment.  Which hopefully is "good," meaning no sign of disease (which I'm really hoping for).  Then it's one more cycle after that (2 treatments), a 2 week break to let my body recover from Chemo, and then radiation 5 days a week every week for 4 weeks, which is a whopping 15-30 mins each time- and compared to chemo, it's a "breeze" (considering they're blasting me with a focused radiation gun).  Followed up with a PET scan to see if my cancer is in remission. If it is:  then I can can get my damn port taken out (although I've grown fond of it, and have named it David).

I'm lucky in that I have had a very "easy" time with chemotherapy on ABVD.  I've dodged the biggest side effect: Nausea.  I do have some, but I rarely need to take any of the (3) anti-nausea meds I've been prescribed.  I just have to eat small meals, instead of big ones.  Fatigue has been the worst, and is cumulative so I'm getting more and tired those days after treatment- but hey, it's easy to remedy: I just sleep a lot and eat when I'm awake.  My "low" week isn't all that low, and my good week is pretty good. I've also had a good run of not having lung issues, which a lot of people have. I've also maintained my pre-chemo body weight through my treatment thus far.

My schedule of events before and after treatment:

So in the past I've gone over specifics of what's dished out at treatment, with drugs, what to expect (especially if it's your first time, because it can be scary not knowing what to expect).  However, since I'm now a "veteran" of this stuff, this is my basic run down of the weeks; week before treatment and week after treatment.  I decided early on that I was going to set a schedule of events to maintain some sort of order of things, so when I do go back to work sometime in the spring (hopefully) I won't be totally out of it and struggling to get up at a decent time/be resourceful and able to do my job:

Day before treatment:

• Eat dinner, nothing too spicy, and not a gargantuan 3000 calorie Olive Garden Dinner either, just eat. 
• Drink plenty of water.
• Be positive as can be- chemo is about crushing cancer, it's all to help you as much as possible, and it's a good thing.  Also being positive can go a long way, and regardless of what people think when they ask "are you depressed or angry?" and I say "Nope.  Not once really for the most part."  They never believe me, but it's true.  I'm pretty chipper.  And if I were I would most certainly say it, because I have cancer, and I'll say whatever I damn well want when I damn well feel like. Heh, I sounded "all tough" there didn't I? But seriously: I'm a doer, planner and a mover: "let's get this shit underway, planned start to finish" sort of person.
• Pack a "snack bag" (sour candy in case I get weird "flavors" in my mouth with the chemo meds), bottle of water for during chemo, and some granola bars.  Some ginger candy is also nice to have, especially if you suffer from heavy nausea.
• Try to go to bed at a decent time.  Mostly because my treatments start mid/late morning (I have a bit of insomnia from chemo).

Treatment day:

• Eat something for breakfast- nothing too big, don't go to Denny's and order some sort of disgusting 4000 calorie Hobbit 2nd-breakfast (not to be confused with elevenses).  Just have a bit of toast with bacon (or tofu if you're like that) or some such stuff.
• I'm a coffee fiend.  I drink coffee before I go (I don't talk much in the morning unless I have coffee, and Oncology nurses are super talkative- I don't want to look rude)... and have more coffee when I get there (they have good coffee).
• Slap on some lidocaine (a nice goopy amount) where my port is, and tape some saran wrap/plastic wrap over it, at least 1 hour before going in for treatment.  Don't use a plain gauze type bandage, the lidocaine will just just absorbed into the bandage and it will do nothing to help with the poke from the port getting accessed.
• Show up on time (be a big boy/girl), get my port "accessed" for a blood draw, wait 20-30 minutes to get the results back (they check blood counts + white cell counts, so see if they need to adjust treatment doses).
• Meet with the Doc. for about 10-20 minutes.  We don't have much to talk about, as I'm doing very well with treatment, ALL of my previous swollen lymph nodes have receded and disappeared (well, not 100%, the type I have leaves scar tissue where there were previously swollen lymph nodes, but they're a bit had to find because they're shrunk down so much).  I also have a Google machine, so I know what's up when I need to know about something.
• Get my pre-chemo meds, followed by ABVD.  Last about 3 1/2 hours.  You wouldn't believe how much reading I've caught up on.
• Finished up, and ready to go.
• Super wired from the steroids (lasts a couple of days).  Coffee doesn't help the twitchy-ness, but I love me some coffee.
• Take a Claritin before going to bed.  This is combats the side effects of the nulasta shot on....

Day after treatment:

• Go back in, get a nulasta shot to increase my white blood cell count.  Causes bone pain- take one Claritin every night for 4-5 days, this pretty much prevents the bone pain.  If some does come though- 2 ibuprofen will take care of it 100%, for 8 hours at least.
• Drink lots of water.

2 Days after treatment:

• Keep taking that Claritin, for 4-5 days every night.
• Take my temperature every night before bed- a temperature of 100.5F, and it's a call to the doctor no mater what time- can't get sick during treatment, it could delay treatment, and no delays/few delays the better it is.  I've never ran a fever or gotten sick so far (I avoid everyone at the hint of sickness).
• The steroids start to wear off, and I get a bit run down.
• Minor nausea for me, I just eat small meals 6-8 times a day and I'm fine.  I hardly take any of the 3 anti-nausea meds I was prescribed.
• Here on out I try to eat more bland foods, nothing with too much spice, eat a little extra protein  and avoid drinking alcohol + mouthwash with alcohol in it.
• Drink lots of water.

Day 3-5 after treatment:

• I usually refer to this as my low time.
• Continue with Claritin until 5 days/doses pass.
• Continue with: eating more bland foods, nothing with too much spice, eat a little extra protein  and avoid drinking alcohol + mouthwash with alcohol in it.
• Jaw pain, feels like I've been gnawing on wood all day.
• Sleep quite a bit, take quite a few naps, eat when I'm not sleeping, and sleep when I'm not eating.
• Read + watch a LOT of TV.
• Food has a very subdued taste- it's like the taste volume got lower to a 3 in volume.
• The inside of my mouth feels "swollen" for lack of a better term, with light sores on my tongue, which looks WAY worse than they actually feel.  When I first started treatment they were bad, but now they're not painful any longer, just lack of taste and swollen feeling in general.  Salt water gargle helps 100%. I also have a fine French sea salt, which tastes lovely on most meals.  The Portuguese salt is pretty good too.
• Drink lots of water.

Day 5-7 after treatment:

• Fatigue + lack of taste are waning and my energy is coming back slowly.
• Food taste more like food (it's on a volume of 7 now).
• Less sleep needed.
• I'm usually good to go out and do errand running on the 5th to 8th day after treatment.
• Drink lots of water.

Days 8-13 after treatment:

• I pretty much have recovered at this point.  And usually feel pretty normal- you know, minus being bald and all.
• Taste is back, AKA hello Indian food!
• I try to make sure I get 8 hours of sleep to normalize my schedule, to break any habit forming 12 hours of lazy sleep needed (sleep when you need it, but don't sleep extra "just because you can"- it'll be rough for you when you go back to work).
• I exercise every ones of these days usually, and lightly, on the exercise bike for 30 minutes maximum (sometime longer if the DVD I'm watching is particularly good).
• I pretty much eat whatever I like/eat normally.  Also an occasional glass of wine or beer is nice and refreshing and will help you feel normal- well, with moderation, don't you know get shit-faced every other week on cherry-schnapps (you're so trashy for some reason in my mind dear hypothetical reader).
• Make sure my fridge + freezer are totally stocked for my upcoming "down time" so I won't have to worry about food.  Take out the garbage, recycling, clean the cat box (with gloves- to minimize illness just in case), do all of my laundry even though I sit around in the same pajamas for 4 straight days (because you know, you needed to know that).
• Make a crap-ton of fruit smoothies for after treatment (cold things are nice in the chemo mouth). I've been sneaking kale into them... and it's not bad! ...however don't take my word on it as I can barely taste anything during down week, your mileage may vary.
• Drink lots of water.

Ready for next treatment to begin! (Drink lots of water + and be as positive + stress-free as possible and repeat as much as possible until you're done)

What I'll do when all of "this" is done?

When I get my clean bill of health around the middle of April 2013 (which I hope I do), and am in remission, what will I do?  A few things:

• Karaoke bar with friends.  Not because I like karaoke, but because I like my friends.  And seeing them do karaoke.  Embarrassingly doing karaoke at that, AKA "the best."
• Some sort of birthday thingy out and about for me, as I'll be on my first week of radiation when it rolls around, and my friends are great.
• Wendy and I having a late valentine's dinner (my last chemo treatment is ON valentine's day 2013 of all days), but saved for when I'm 100% done with treatment, and hopefully get the good news of remission.  Also having some hair on my head would be nice around that point too.
• Scotch.  A very expensive bottle of Scotch.  Single Malt.  15+ years. Served neat. I will savor it and share it with friends.  Also: proper scotch glasses.

As a side note/story about scotch:  My grandfather, who I adore, and really of everyone in my family on both sides- we're the most in common/alike.  When I finished grad school (10 YEARS AGO... ugh, I feel old), my grandparents came to visit California (where I was living at the time), and while driving in notorious SF bay area traffic, I was asked by my grandmother out of curiosity "what's your drink of choice Dennis?"  I replied "Scotch.  Neat."  (some times gin- it tastes like a forest in a bottle).  My grandmother said "Hah! You hear that?! Scotch!" looking at my grandfather laughing. My grandfather got a little stunned, turned to me and stared at me a few seconds and said "Scotch?  Really?  Well, you're not half bad after all."  My grandfather is the only person in my family who likes Scotch, and he never thought there would be another Raines who would- until I came along (and tried Scotch off and on for 3 months, until I decided that I actually liked it).

He's been flying before he could drive.  Because you know, you could be a teenager, and just hop into a plane and be good to go then... they had less rules about stuff way back when.

Visitors at Treatment + Shaving

I had my 3rd of 8 ABVD treatments last week, in about 1 week I'll be half way through treatment, ready for Radiation Treatment to start for 1 month.

I responded fairly well to this last treatment.  The worst so far has been the very 1st treatment- which is typical for most people on ABVD (although everyone is different).  

This go around I had mainly jaw pain- but not too terrible, and it lasted for a few days.  The worst again was probably the fatigue which means LOTS of sleeping and extra naps.  There's also a sensitivity/dryness in my mouth, and very minor nausea (which hasn't grown worse at all as I thought it would), which hasn't kept me from eating.  Most all of my swollen lymph nodes have petty much disappeared or are very difficult to spot- at least I know it's working. Here's the exchange with my Dr. during my appointment:

Dr:  Have you had any trouble eating?
Me:  Nope.
Dr.:  Let's see... actually you've gained about 2 pounds since you started Chemo therapy.
Me:  Really?
Dr::  Yes... you could use more exercise.
Me:  ...I guess exercise more then.

I had some visitors this past treatment as well:

They're talking about shoes, not what Dawn stepped in.

So most of my hair has been shedding, it actually comes out with barely any pulling.  It's a bit fascinating to be able to pull it out though.  So far I've only lost my hair on my head, and beard.  Eye brows and eye lashes are staying put- they haven't budged (as well as all of my other hair). I haven't shaved in about a week though- my hair does grow, it just does VERY slowly.  

Weird note about me- I actually enjoy shaving.  I shave with a double edge safety razor (because inside I'm apparently a grandpa of some sort), and have gotten pretty good with it- no nicks, and is actually "fun" to shave (for me at least)- I use a shave mug and all that jazz as well.  I also got tired of buying $4 a pop disposable cartridges, and instead have 200 safety razors for about $15, which should last me about the next 2+ years:

When the hair on my face starts growing again, I'll probably try my hand at a straight edge razor (and probably turn my face into sausage).

It'll be awhile before I can shave again, but I suppose it will save me about 15 minutes every morning. I can use that time now... for sleeping.

Next post I'll talk about my schedule, cooking, exercise, treatment, and what not- I'm on a pretty well regulated schedule I've set up for myself.

They're not so bad when they aren't fighting over who gets to sit in the cardboard box: