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:

How did I find out I have caner- well, glad you asked

My friend Andrew asked me over my first hair cut/guys night, "how did you even know to check if you had cancer?"

Well this is how I found out.

Mid summer July 2012, I noticed a swollen lump on the right side of my neck. I had thought it was a pulled muscle, as I get those frequently.  I waited a couple of weeks- it wasn't sore, and the swelling hadn't gone down.  It was a lump the size of about 1.75" on the long side, and .75" on the wide side- right on the middle of my neck on the right side.

After that I thought it was a swollen gland, the last time I had been sick (hardly ever sick) was in April- so I had thought perhaps it was a regular swollen gland from an illness way back when.  Which meant the swelling should go down in 4-6 weeks.  

Come late August- no reduction in swelling.  I had no other symptoms other than the swelling. So I made an appointment with my fantastic primary care physician, he wanted me to see a specialist, otolaryngologist (AKA Ear, Nose and Throat Doctor) to see what was up.  By the time I saw him, the primary swelling mass had started to shrink... and 5 more smaller spots around it started to swell up as well.

I went on vacation to California for a few days, followed up by jury duty for a week.  Yay me.  We also let a crack dealer go, because the state didn't have enough evidence beyond a reasonable doubt, however we were all pretty sure he was guilty.

Early mid-September, my Otolaryngologist had me get a CT scan of my neck.  It took one week to get the the results, which were inconclusive.  So- fine needle aspiration... that was not an enjoyable experience.  The results came back a week later, inconclusive.  However, a serious form of cancer was ruled out (along with anything viral), as there were not traces of cells from other parts of my body present.

Early October, I had to have a Lymph Node Biopsy of the swollen glands.  It took about 5 days for the results to come back- which were positive for Hodgkin's Lymphoma.  My initial feeling was relief if you can believe it, it was finally the first conclusive diagnosis of anything for the last 3 months.I had prepared myself for basically any diagnosis- which of all the cancers it could have been- that's the one to get, as the cure rate is about 90% given my age and what I guessed/hoped my stage was at.

So long Otolaryngologist, hello Oncologist, which is basically a cancer specialist.  My particular doctor (who I refer to as my "doctor" in all of my posts.), is specifically a lymphoma specialist. Newly Diagnosed: If you happen to live in a large city, particularly on one of the coasts (but not always)- you should have a great deal of resources to treat your disease.  Although, if you live in a smaller city/town, or rural area- there's a strong chance your  oncologist will have only seen 1-2 cases of Hodgkin's Lymphoma in their career, and you maybe the first.  It's not *that* common of cancer, but don't fret- it's one of the most curable cancers, and you will most certainly get the same treatment as most hospitals operate generally the same protocols for treatment of Hodgkin's Lymphoma.

I had to get a PET Scan, so my new doctor could stage my cancer.

I saw my Oncologist about 4 days after my diagnosis, who was fantastic.  I got my estimated stage, which was IIA.  Meaning, it was in 2 lymph regions on one side of the diaphragm, and didn't seem to be in any organs, and I didn't have any of the "classic" symptoms   If you ever get a PET scan- totally ask to see it, it's pretty amazing to see the inside of your body with a mouse wheel scroll.  Hooray for science!  Mine was stage II instead of Stage I- because it was in two lymph regions in my body, specifically in my neck on the right side (where most of the activity was) and in my chest, in between my heart and lungs, which had a lot of activity but was just starting to happen- Hodgkin's Lymphoma is a notoriously slow growing cancer- and highly treatable. So to get a "final" stage, I had to get a bone marrow biopsy, JUST to make sure the cancer wasn't in my bone marrow.  My Doc was pretty sure it wasn't, but pretty much everyone will get this- and if they give you a choice to have meds during the biopsy- DO IT.  As a old friend of mine who is a nurse says "we call those the Jedi drugs, we just wave our hands and say 'you will not remember this.'"

Mid October: I also got my medical port "installed" same day, because I have terrible veins.  It's become a running joke with any nurse I have about how terrible my veins are when they have to do a blood draw.  Newly Diagnosed: I cannot stress enough to get a port if your insurance/money/credit card will allow it.

The results of my biopsy came back- free and clear.  I was typical Hodgkin's Lymphoma, AKA Nodular Sclerosis Hodgkin's Lymphoma Stage IIA.

Start of November, which was 2 weeks after my port/bone biopsy,  I started chemotherapy.  And one month later- I've finished 1/4 of my scheduled treatments, and have been responding well to treatment so far, and my 2" swollen lymph node on my neck is virtually non-existent.

I have about 4 or 5 pet charities I donate to regularly,  one of the things that will now be part of my "money I donate to charity" is lymphoma research, and cancer research in general. Specifically: the Lymhopma and Leukemia Society, whose budget comprises about 80% toward research grants.  As a weird side note: I "work" in medical research as a day job, and really- funding is everything.  In a country that prefers to build multiple $5 billion (each) dollar aircraft carriers simultaneously (because you know- we need a fleet of 12), and $1.8 BILLION was spent on the presidential election by both candidates- you know, so they can robo-call you at 6:00 PM, but only $250 million on cancer research last year (talk about stupid priorities, and no- it's not "communist" to spend money on citizens well being), they could use your donations.

Also: cat.

New "cat box"... they fight over the privilege of squatting in it.

1/4 Treatment Done + Hair-loss + Stuff I Get in the Mail

On Wednesday  (the day before turkey day), I had my 2/8 treatment, meaning I'm 1/4 the way done with 1 cycle finished.

Yay!

I normally have treatment on Thursday's every other week, but because of turkey day, I had mine the day before... along with every other cancer patient in Seattle.  The wait for treatment was 2 hours (!), that was a lot of pissed off cancer patients. I was in around 12:30 PM, and didn't get home until about 6:30- talk about long days.

This go around, was a little better thank my first treatment.  "Better" being relative: I didn't have the painful salivary gland pain problem, and my jaw pain from the V wasn't nearly as bad.  The bone crushing pain from nulasta wasn't present- or at least I didn't feel it as I had taken claritin every day after getting the shot.  I did have some nausea, but it was pretty light and easily managed with the anti-nausea drugs (although I imagine over eating on turkey day probably caused some of it).  The fatigue though hit me pretty hard, spending half the day in bed for the last 4 or 5 days, and currently I'm starting to slowly move to my "up week" with some energy.

Oh yeah- my hair has started to shed.  I might need another "trim" in the next couple of weeks. Which is a normal side effect of most chemotherapy drugs.  Basically the drugs attack the rapidly growing cells in the body- which are the cancer cells, stomach lining (hence nausea), mouth (mouth sores+ pain), and hair follicles.  Newly diagnosed: Most patients shave their heads, because well- it's kind of messy.  It tends to come out in clumps and patches- although everyone is different.  Mine is kind of shedding evenly- and pretty lightly, so far anyway.  If you're wondering- yes, of course it grows back after treatment.

Head coverings:  So I decided to wear a hat for my hair loss, with my hair cut to reduce stray hair being everywhere (I do have cats, so it's not like I'm not used to it).  I currently have 3 1/2 hats- I didn't put together the frog hat yet my friend Lynn sent me (shame on me).  

I think it might be "indoor" only (but I will wear it!)

My friend Tom in CA sent me the hat on the right, and my boss sent me the scarf on the left.  Did you know I like gray things?  I do- it matches all of my clothes.  Which are gray.  Entirely gray.  (Technically I do own 1 red sweater- honest).

Mainly I decided on a hat- because well, I'm a dude.  Any hat or super short hair cut/buzz cut/bald head will due.  It's a pretty easy decision. I'm a guy: as long as I wear a peacoat- I'll look good. Most "head coverings for cancer patients" are geared towards women- for obvious reasons, with scarves and wigs.  The hair pieces for men look like they belong on 1970's porn stars.  No seriously:

That or I'd have to start teaching wood-shop or something.

I'll just get a pair of big rimmed glasses instead:

Happy Turkey Day

I had treatment this Wednesday before Thanksgiving, so I'm unable to travel the distance to my parents (I'll visit the week after on my good week), but I'll be spending it with some good friends from college.

Talented cat with thumbs

I also made a chocolate pecan pie for dinner on Turkey Day. Wendy is in Idaho with her family- and I wanted to share some with her before she left (hence the missing slices).

Ollie (my friends daughter) made Turkey Day over the top.

O:  Do you want to play store with me?
Me:  Actually I want to go home and play food-coma now.

Other Side Effects Post-Treatment 1 and Ports

So it's been slightly over 1 week since my first ABVD treatment:

Initially I had virtually no side effects, and I never had the most common side effect: nausea (whooo-hoo! Although I'm sure I'll eventually have it as the side effects of ABVD are cumulative), I did eventually get some nasty side effects later on.

• Nausea: I wouldn't exactly describe what I have as nausea, it's not really even uncomfortable, and it’s always just kind of “there.”  It's a weird "feeling full" feeling even when I'm I haven't eaten anything. I have not been taking my anti-nausea meds though because of this (yet). For the Newly Diagnosed: You need to maintain your weight!  Eat more calories and protein, and try to exercise a little on the week you feel good.  Some people actually gain weight while on ABVD… so, uh, exercise.  Seriously though: eat anything you want, as long as you can keep it down.  When else in your adult life are you going to get to eat ice cream for most of your meals?

• Jaw Pain:  After about 3 days, I got this.  It’s a side effect of the V in ABVD.  It feels like I've been gnawing on a bit of wood all day, and my jaw was terribly sore.  It lasted for about 4 days, although only the first 2 were “terrible.”  Plain ibuprofen or acetaminophen helped… but not by much.  Luckily, for most people (everyone is different) it usually only happens after the first treatment… BUT not always.

• Salivary Gland Pain:  HOLY HELL. This was the worst.  It started also about 3 days after ABVD, and lasted about 4 ½ days.  It’s a uncommon side effect of treatment, which was probably brought on as my lymph nodes that were affected were on the side of my neck near my jaw.  It felt like virtually anything I put into my mouth- electrified my salivary glands in my mouth- ALL of them, and lasted between 5-10 seconds (which in reality feels like 10 minutes). It slowly faded after about 3 days. I was told as my enlarged lymph nodes are shrinking- this PROBABLY won't happen again  Newly Diagnosed:  If you have this, try eating cold things- ice cream, smoothies with a couple of ice cubes dropped in the blender- it helps.

• Bone Pain:  This is a side effect of the nulasta.  Everyone gets this shot, because ABVD lowers your white blood cell count, and nulasta raises it.  One side effect is bone pain, as there's more activity in your bone marrow, particularly in the larger bones- femurs and pelvis.  Per their super cheesy “woman running though a field of sunny flowers for no reason” commercials, where some guy mutters out the side effects rapidly for 30 seconds- they mention “mild bone pain.”  MILD MY ASS, it felt like an elephant was stomping on my pelvis for 3 straight days.  Newly Diagnosed:  Take Claritin the night before you have to get this shot, seriously somehow it works (or any other sort of histamine).  If you have continued pain: take ibuprofen for this- it made the pain completely go away for me, well for 6-8 hours anyway. Acetaminophen will do nothing. It can cause headaches in people- I think I may have had that, but I chalk it up to skipping having coffee on a couple of days (I’m a horrible coffee fiend). Also for the Newly Diagnosed: Unfortunately… if you have this side effect, you’ll get it most every time you have this shot- which would be the day after EVERY treatment.  Luckily it’s easy to negate the pain.  If you find that ibuprofen and histamines AREN'T working- tell your Doctor or Oncology Nurses (for ANY intolerable pain you have during treatment), they will give you something stronger (which will probably be a narcotic of some sort).  Let your Oncology team know EVERYTHING about how you’re feeling.

• Medical Port Stuff:  Remember when I first had my port accessed?  I sure as hell do.  I asked for analgesic cream to apply to the port (apply 1 hour before getting stuck) so I wouldn't feel like my nurse was running me through with a lance.  I had a routine blood draw yesterday, and asked to have it done on the port to see how the cream worked.  My oncology nurse Mia, agreed to use the port instead of an arm vein to do the blood draw, whenever the port is accessed- the nurse has to suit up with mask, gloves, swab down the port area etc, vs the an arm vein which would take like 5 seconds-  my nurse is a good sport and humored me. They do the whole suiting up because an infection in the port area would be very bad.  The nurse stuck me… and I felt nothing.  Yay!  I wasn't sure if it would work, as I felt no numbness or anything like that, but indeed it did work.

My friend Tom in California sent me this photo.  His wife is French, so she had never had a Twinkie before (?!), so he went out and bought a box while he still could, and shared one with their roommate: