Feeling Better Every Day

Hi All

As you saw from Dave's mini-blog, we made it back home on Monday night.

The week of treatment was nearly as icky as the first cycle, but since I had a feeling what was to come, I think I responded to many of the symptoms a little better. I had friends visit on Monday, both in the morning and evening, which was wonderful! Of course, Monday night, I had a surprise drop in my blood pressure to the tune of ~73/39. I had to spend most of Monday evening talking with friends Sarah and Larry lying flat on my back. There was a thought the next day that this might not bode well for my long-term tolerance of the treatment, but nine doses later, that thought was nixed. I had similar side-effects as the first cycle (temperature, chills, nausea, aches & pains, dry flaking itching skin, low blood pressure, etc.) and I was treading along through my 9th dose.

On Thursday, I was put on medication to keep my blood pressure up. We skipped Dose 10, then went ahead with Dose 11. After 10 doses, they couldn't keep my pressure above 85 systolic without medication, so that was it for doses of IL-2. On average, most people tolerate one less dose during their second cycle than their first cycle. 12 doses for cycle 1, 10 doses for cycle 2 seems pretty good to me. One of the nurses mentioned that one of the other IL-2 patients was only able to receive 2 doses the whole week, so I feel pretty darn good! When I go in for the 3rd cycle, the body should have "forgotten" about IL-2 and it will be back like the Cycle 1 side effects.

Since I was given no more doses after Thursday a.m., I felt pretty good the rest of the week. Tired, yes, but much more lucid! I could actually have conversations! Watch TV! Eat! That is why we were able to come home a few days early this time around. I've been hanging around here watching TV (no bon-bons! though thanks Blair for the choc truffles!!!), and am planning on doing some work here at home Thursday/Friday, then back to Orofino on Monday a.m.

Some of you may have seen a recent blog entry about low blood platelet counts. We are still somewhat foggy about this, so I won't be able to give you any information other than we were told by two different sets of nurses that low blood platelet counts seems to have some anecdotal correlation with a positive response to IL-2. I had low platelets, and the doctors and nurse practitioners were very excited about that. We go in for a CAT scan in November, then an appt back in Portland to assess the utility of the IL-2 treatment. That CAT scan will pretty much hold our treatment future and possible prognosis.

Everyone continue to keep Dave and I in your thoughts. We've got another month to wait. SIGH. We'll be spending Thanksgiving here and at my brother's. We've just had way too much time in the car. Its gonna be a Long November.

Cheryl

Back home safe and sound

Oy, me am tired. Over the span of three days, I drove from Moscow to Boise to Bend to Albany then back to Moscow.

Cheryl is tired, itchy and piddling like a fiend but is in pretty good shape. She's camped out on the couch catching up on her soaps.

We'll have a more detailed entry later.

Dave

Good news, everyone!

Futurama is coming back, yes, oh my.

For more relevant news on the cancer front, Cheryl was informed by one of her nurses that she had a low platelet count. That sounds bad, but lo, there is anecdotal evidence that a low platelet count means the IL-2 treatment is working.

Mind you, anecdotal evidence isn't quite, y'know, empirical evidence, but good news will be taken in any way, shape or form here at INB headquarters.

The latest info from Portland is that Cheryl is skipping dose #10 due to a CO2/pH imbalance - I'll pretend I know what that means - and, while she is tired, bloaty and itchy, she is not as tired, bloaty and itchy as she was during her previous stay at Providence. This, too, is a good thing.

Dave

Wednesday in the hospital Post

I'll make this one short and sweet. I'm lucid, a little tired, itchy, and have just received my 7th dose of IL-2. I'm in relatively good shape this time around, through 2 more days of this may change my demeanor a bit. Last night I had the chills (rocking the bed!), and my blood pressure had been mostly good, though there have been a few low points, where the nursing staff gave me some liquids to coax that wacky pressure up to more normal.

Dave will likely blog remotely for me in the next few days. Thanks for all the support, everyone!

Cheryl

Today's update is brought to you by the letter "O"

Cheryl's feeling a little "ooky" but is otherwise doing okay. Since she's not exactly in the mood to get out of bed and get the computer, I'm in charge of the blog right now. She's getting her 5th dose of IL-2 tonight and is doing pretty good. Slight fever, and her blood pressure did bottom out at an impressive 75/30 at one point, but she's remarkably lucid and in good spirits...if a bit itchy.

Dave

Hospital Stay Take 2: Day 1, Part 2

Well, they say that the side effects come quicker your second time through, and I am here to tell you that "they" are right. I've already had chills, and I think my appetite is going south.

Ah, well. Such is life on Interleukin-2

Cheryl

Hospital Stay, Take 2: Day 1, Part 1

Hi Everyone!

Yep. Its that time of the month again. I was admitted to Providence Portland Medical Center this morning to begin the 2nd 1-week cycle of Interleukin-2. Oh Boy. Well, I'm not excited about being in the hospital but I'm certainly hopeful for a positive result from the regimen I will under go for the rest of the week!

Dave, unfortunately, could not make the trip this week, but I am ably assisted by my able assistants: my parents, Bill and Rose Mary. Take a bow, folks! They will read/sleep through the week here, spending their days with me, and the nights at their motorhome. I'll likely be able to entertain them for today, maybe tomorrow, then it gets a little tricky. If I am unable to put in a blog entry, they will pass info on to Dave at home, and he will get you all the news here from Portland.

Last time in the hospital, we determined 2 things:
1. Compazine decreases my ability to pee
2. I am allergice to many adhesives
The nurses have #1 down, and already made sure that it is noted in my chart not to give me compazine. But do you know how many people I had to tell to make sure they did not use any adhesives directly on my skin for a dressing on my triple lumen catheter (central line)? 3 nurses and 2 doctors. I had to describe hives, itching, taking benedryl, red marks, swelling, etc., to 5 different people! All they needed to do was just put a skin protectant on my skin prior to placing the dressing over my catheter, but they kinda playfully ignored me a bit. but I ended up getting my way in the end, with help from one of the nurses. Hopefully that allergy is now in my chart!!

I've already had one visitor today (thanks for the chocolates, Blair!!!!!! They were/are yummy), and mom and dad went to Burgerville USA for lunch. So now we wait until 3 pm for my first IL-2 treatment. The nurses and doctors here say the side effects should show up quicker than last time. I guess I should eat more chocolates before my appetite disappears again!

Cheryl

Another entry in the "Thank God We Have Health Insurance" Files

So, we got our first bill from Providence Medical Center today for Cheryl's first week of treatment.

Guess how much it was.

Go on, guess.

Nope, guess again.

Higher.

Higher.

Stumped?

Don Pardo, tell us how much it is.

Try over $65,000.

I told Cheryl to stay out of the minibar, but noooooo...she had to have her the macadamia nuts.

The bulk of the bill - $51,000 worth - was the Interleukin-2. Holy cats, this stuff is worth its weight in gold. Actually, since gold is selling for about $500 or so an ounce these days...and each dose probably weighed in at around eight ounces, lemme see...I'll have to take off my socks for this one...man, it's worth more than its weight in gold!

I should find me an Interleukin mine and stake a claim or sumthin'.

Fortunately, Cheryl's catastrophic coverage (and I think this qualifies as catastrophic) will pick up all but six grand per year, which is expensive but nonetheless more affordable than what the final bill is going to be here. At least, it'd better or some hapless insurance adjustor is going to meet Angry Dave.

Either that, or, well, you don't need both kidneys, I'm told...

Dave

So here's the update I promised

Yes, I know. I promised a long update to the blog on Thursday. Obviously, that did not happen. Well, here you go.

Since coming back from Portland, life has been relatively boring. Most of the side effects were gone as of Wednesday, but I'm still feeling a little icky in the tummy. That may be due to the lack of food going through my digestive tract for 5-6 days. I'm feeling much better today. The itchy dry skin is still around. Aveeno is currently my life saver. I love baths! Oatmeal baths are just an excuse for me to lie in a hot tub reading a book and turning into a prune. But I've never really needed an excuse for that!

I go back to work tomorrow (Monday) in Orofino. I'm still having some sleep pattern funny business, and have been waking up pretty early. Gosh darn that week of being woken up every 2 hours for vitals! So I'll head out at 6 am for work tomorrow.

The next phase in our Cheryl Gets Healthy Master Plan is to go back to Providence Medical Center in Portland for another round of IL-2 the week of October 22-27. Oh Boy. Can you tell how excited I am? On the one hand, this is the best option for remission. On the other, it makes me feel ookey. Hmm. I guess we'll go for ookey for now, as the other option is, well, no option. If any of you want to visit me in the hospital, I would advise swinging by on Monday afternoon. I can't guarantee I'll be in a talkative mood later in the week (Sorry Dave T. and Rhiannon...I tried to carry on a conversation, but, um, I was extra-loopy/ookey).

Life is slowly getting back to normal. Football, football, football! I made a horrible batch of zucchini bread today. Dave went to a Magic event this morning, and just got back home. Life moves on.

Cheryl

And.... We're back to the Palouse

hey, everyone, its Cheryl! Yes, after a week of getting Dave's blog ditties, I'm back in control of the keyboard here at "INB" Central Command.

I'm quickly on my way to bed from here (my parents drove me home today -- Dave got home Monday p.m.), and I'll post something longer tomorrow. In the meantime, I want to thank all the kind words, emails, phone calls, cards, silk flowers, and visits to the hospital I received last week. Its amazing when something not fun happens, but everyone still wants to be involved.

Love, Cheryl

Back in...Albany?

Plan A (get out of hospital, drive back to Moscow) got scratched due to general ookiness. Plan B (drive part way to Moscow, crash at motel) also scratched. Hence, the fallback Plan C, drive down to Albany and spend the night at Cheryl's folks' place. And, at this point, since I need to be at work tomorrow, it looks like Cheryl will spend the next few days here and then return to Moscow either by plane or by car.

She is feeling much better now, little if any nausea, mostly just lethargic and a wee bit dizzy, but her appetite is back somewhat. I imagine she'll be sleeping things off for next day or two.

The trouble with master plans...

...is that they seldom seem to work out the way we'd intended.

The plan was to get Cheryl out of the hospital yesterday and either drive to her folks or get part way back to Moscow before sacking out in a Motel 4.6 or somesuch. Unfortunately, that pesky blood pressure didn't get back into good numbers until the late afternoon, and by the time we could have been checked out, it would have been midnight. So we spent another night at the hospital.

Cheryl is feeling much better now and hopefully the nice doctor will come in, discharge us and send us on our merry way very shortly. That would be good, since I am perilously low on clean underwear at this point.

Last Cycle Blues

It's a little after 9:00 p.m. here at Providence, and I'm spending the night here so Cheryl and I can (hopefully) get out of here a little early tomorrow. It doesn't look like Cheryl's going to be getting the last IL-2 dose as she's been given two boluses and is getting a third as her blood pressure has been stuck at 74/39 for the past hour or two, and that's too low. Still, 12 for 14 is pretty good in the greater scheme of things.

Cheryl's still a little loopy/sleepy/knocked on her ass, not so much from the IL-2 treatments but the various drugs they're giving her to combat the side effects. Dilantin, Demerol, Benadryl...all sorts of stuff that's going to keep you pretty non-responsive to the rest of the world.

Nonetheless, Cheryl's been a real trooper through all of this and I'm very proud of her. I wish I could be more useful than just refilling her water bottle. Every little bit helps, I know, but it's still damn frustrating.

Day 5 Update - in the home stretch now

Well, Cheryl was a perfect 11 for 11, but decided to forgo dose #12 due to "general ookiness," and I can't blame her. It sounds like she'll probably get just one of the last two scheduled doses before getting discharged on Saturday morning. And she's getting moved to a private room, so much the better.

Cheryl is feeling much better, but still suffering somewhat from nausea, itching and other intestinal maladies.

And I must extend many, many thanks for Miss Ann and Maren for putting me up this week. We owe you two big time, and may take you up on those future offers of a place to crash.

Cheryl is sleeping fitfully now and all in all doing fairly well, but that's just from my layman's opinion.

Dave

Day 4 Update

It's time once again to spin the Wheel...of...Side Effects! Don Pardo, tell us what we've won.

"It's itchiness, Dave, in addition to the nausea, cramping and other intestinal ailments!"

Rats. I was hoping for the $39 ceramic dog, or at least being able to take the rest on a gift certificate.

All in all, things are going fairly well. Cheryl's not loopy but pretty tired from all the meds she's getting, but is a perfect 9 for 9 on IL-2 doses. I've slathered a boatload of some kind of oatmeal-based lotion on Cheryl to hopefully relieve the itchiness (because hydrocortisone is bad, but, wait a minute...oatmeal? When did oatmeal relieve itching? It there nothing this wonder grain can't do?)

Powerful stuff, that oat bran.

Right now, Cheryl is half-dozing while she gets a saline drip in preparation of dose #10 this afternoon. There's so many IV bags, empty and otherwise, hanging from the IV whatchamadoozit that it looks like a Christmas tree. No, really, Santa, you shouldn't have.

Unrelated Note To Anything: You know you are getting old when you like getting socks for Christmas.

I was hoping to have an article done for Star City this week, but between tending to the ailing wife and lack of testing resources, it doesn't look like that's going to happen. So, Craig, if you're reading this, I really do have a good excuse for missing my deadline; the cancer ate it. Plus, Cheryl's computer (which I'm using at present) is really annoying to use as the right shift key, Enter key and up arrow key are so close together I keep hitting one instead of the other.

The things I have to go through, I swear.

Lunch just arrived, so you know what that means: I get to bogart Cheryl's ice cream.

What? We can always get more...

Dave

Day 3 Update

We have encountered some turbulence, the captain advises you to return to your seats and fasten your seat belts...

Up until about 4:00 yesterday, things were going swimmingly. We'd just gone for our walk around the oncology ward and all seemed well. Unfortunately, the bugaboo of the dreaded side effects finally showed up. Cheryl was suddenly wracked with horrible chills and was shaking so hard I thought I'd have to call the nurse for "a young priest and an old priest."

Cheryl was pumped full of drugs to bring the chills under control, but since then, she's been nauseous and cramping and lots of other things you really don't want to hear about, and her blood pressure got down to a really fun 82/56 at one point. Since Cheryl's always had low blood pressure, we're keeping our eyes on that. Since most of these meds have a sedative effect, she's sleeping most of the time now, so I don't think we'll me making too many walks around the ward anymore.

I got her a few books from Powell's, or, as we bibliophiles like to call it, "heaven," including a sushi cookbook so she can finally get around to making me some California rolls when she recuperates. And, amazingly, I managed to not spend $100+ this time.

Tomorrow is another day, however...

Cheryl will get her seventh dose of IL-2 at 3:00 today, marking the halfway point. Actually, since most patients can only manage between 11-13 doses, we're most likely past the halfway point.

I'll take the good news anywhere I can find it these days.

From the Department of Fortuitousness

Cheryl mentioned how much Prilosec made her tummy feel better. Funny how, while she was swigging Pepto, Maalox and Gaviscon, I didn't think that Prilosec was now an over-the-counter medication.

If we'd started her on that, we probably never would have discovered the tumors in her stomach lining until...well, it really would have been "get your affairs in order" time.

Just something to think about.

Dave

Hospital: Day 2 -- A new beginning

Last night wasn't too bad. I slept pretty good between the regular vitals checks every two hours. Perhaps that is because I was doped up with Benadryl. It seems the adhesive from the dressing covering my catheter contains some substance I am allergic to. Hives on the chest and neck was fun. Even more was the removal of said dressing, pulling it off other hives. Oh, the stinging of antibiotic gunk and skin protectant was not so fun. But I survived and got some happy fun Benadryl to allow me the sleep of the mostly dead. That sleep, however, was offset by multiple bathroom breaks. Because I have low blood pressure naturally, they put me on IV fluids overnight, lets just say I had to tote a big wobbly thingy with me into the potty a number of times during the night! Plus the poor nurses have to come look at my, um, results, before they can be flushed. Ahhh.

Side effects not too bad this morning. I have a teeny temperature, some flushing, but that's about it. The nurses say I shouldn't expect the worst stuff until Wednesday. It'll be like I have the flu. Whoopee. Water weight gain hasn't started yet. Be thankful for small favors. I get my next dose in 1/2 hour, then it'll be breakfast time.

One positive thing both Dave and I got from the last 24 hours: Prilosec kicks ass! My tummy feels the best it has in months. I'm sooo gettin' me some of that when I'm discharged on Saturday!

I'll probably blog some more later (or Dave will). Until then...

Cheryl

What a first day!

Hey, everybody! Cheryl here!

Since Dave did the blog entries for from earlier today, thought it was my turn to do some blogging. We left Moscow on Saturday afternoon to my parents' after midnight. Dave got up moderately early on Sunday to head up to Portland for a Magic tournament, while I hung out with my parents. The original plan was to play golf. However, it is late September in the Willamette Valley. Rain. SIGH. So we went out for breakfast, and went back to the house to nap, read, stitch, or watch pro football. NFL is not my cup o' tea (give me college ball any day), but it was fun to watch ex-duck Joey Harrington play well. My nephew Clifford showed up during the afternoon to visit, before I head into the hospital. He just got home from completing the Marines recruit training in San Diego. Many of you know how I feel about the war taking place in the Middle East right now, but I just want to focus here on how proud I am of him. Cliff had a goal, knew what he wanted, and made the adult decision to go for it, achieving that goal his first try. I can't tell you how many times I've told friends, relatives, and acquaintances that the only truly way to be happy is to do what makes you happy. Jobs are jobs are jobs, but if you have something that truly makes you happy in a career, you are blessed. We finished off the evening by playing cribbage. Dave and I finished the night with a 4-2 game lead on the parents. Take that!

I had to arrive at the hospital in Portland at 7:30 a.m. That means we have to leave Albany by 5:30 am. Ugh. The alarm went off at 4:30, and Dave hit the snooze 3 times. Like clockwork, after the 3rd attempt at extending our sleep, I heard a door open, slipped feet shuffle across the carpeted living room, open the door to our bedroom, and look in at us. "Yes, we're up," I call out, before my mother had the chance to rouse us from our warm, comfy snuggling. The door closes, we snuggle in further, but its too late. Dave gets up, turns on a horribly bright light, and we proceed to put the clothes on, brush the hair, and get ready to head to the hospital. I slept pretty well, though had a dream that we were late, and Dave wouldn't hurry, as he sat in the middle of a pile of toys that he said needed to be sorted into "Ebay", "Yardsale", and "Goodwill" piles. The alarm woke me up just as I was yelling at Dave. Good thing I didn't yell in my sleep!

Traffic was OK. Its amazing how many cars are on the road between Salem and Portland at 5:30-6:00 a.m. Traffic never slowed down, really, until we were nearly at the hospital. We got up to the floor, found our room (shared with a very nice woman with a whole heck of a lot of terminal cancer), and began to entertain, oh, 6-8 people who did the poking, proding, and blood taking. Oh boy.

At 9:00 am, I was taking down to the Cardiovascular unit, and received my "triple lumen catheter", better known as a central line. The insert a long tube into one the large veins in your neck, which is extended into the upper chamber of the heart. They gave me anti-anxiety medication prior, though I'm not sure I actually had a response. A shot of pain killer is injected into the area (which definitely hurts), and then they snake the tube down to the heart. The snaking part felt weird! After that, it was back to my room. Dave and I hung out for the rest of the afternoon, and my parents showed up right around 3:00, and saw me get my first dose. They first start an IV of glucose, and then mix in the Interleukin-2 into that. It took 15 minutes to empty the pump, but they kept it in my catheter for another hour.

So far my symptoms aren't too bad. I'm a bit flushed, though no fever, a single hive on my chest, and my heart is beating faster. These are nothing in comparison to the symptoms I'm likely to feel by Wednesday afternoon. Oh, boy, flu symptoms.

I'll update you more tomorrow. Its too hot to have a laptop on my lap.


Cheryl

Hold off on the flowers, please

As much as Cheryl and I do love fresh flowers, the Oncology Ward here at Providence does not allow flowers of the non-plastic variety.

In lieu of flowers, we would appreciate it if you rooted for Wes Welker to have 120 receiving yards and two touchdowns for the New England Patriots tonight so my fantasy football team can have a winning week.

Dave

Oh bother

I was at least hoping to get a jump start on testing for Magic: The Gathering State Championships here in the hospital, but the hospital's firewall has told me that MWS is a no-no.

Bah. PokerStars is right out as well.

Well, frak. What am I supposed to do now?

Contact Info for Visitors...

Hi

I've you want to come to the hospital, call Dave's or Cheryl's cell phones and we can give you the room number. Email requests will also work. Hopefully we will be moved into a private room today or tomorrow, so posting the room may not help. If you can't reach us, ask at information on the 1st floor and they can point you in the right direction.

Cheryl

We've made it to Providence

Hi ho, Dave here, typing away while Cheryl gets her central line (ick) stuck in. Fortunately, she's been given some nice potent painkillers, so I'll get to deal with Loopy Cheryl for a few hours before she begins her first interleukin treatment at 3:00.

We're in Unit 5k, the Oncology floor, for those in the area wishing to visit (however, I don't advise coming today, we're just getting settled in and the parade of nurses and doctors looking to poke, prod and extract vital bodily fluids is neverending). And, sadly, the oncology ward is "booked up" so Cheryl is having to share a room with another patient. This also means I can't crash here, but that might be for the best as I go stir crazy whenever I'm in one place for too long.

There's always Powell's Books, at least. Maybe I can pick up some Get Fuzzy anthologies for Cheryl.

On the bright side, one of the oncology nurses came by to kindly ask Cheryl for some of her blood for some cancer studies (and to be a willing guinea pig for various new thermometers for oncology patients), and he expounded upon many of the new melanoma treatments coming out, which he was very excited about. So if the IL-2 doesn't work (but it will), it certainly sounds like we'll have Options B, C, and D available to us. Which is more than you could say five years ago.

We'll keep you all updated as the week continues. Happy thoughts, of course, are always appreciated.

Dave