I’m obviously not asleep…

Sooo… it’s getting to be about that time.

Next week I’ll be spending three days, back and forth, at the hospital participating in that PAH study I mentioned a few months back. Somehow time just flew right by. I shouldn’t be surprised, but it did come up on me faster than I anticipated.

Am I worried? Not terribly. My parents still aren’t thrilled, particularly Mom, but there’s nothing that I can say that would really make anyone understand.

Mom made rather silly comment on Monday when I was over for breakfast after my monthly lab work, “Do you really want to be a guinea pig?”

My reply to that was, “I’ve been a guinea pig since the day I was born. That’s a rather silly question, don’t you think?”

It took her awhile to digest that comment and I’m pretty sure Dad knew what I was getting at.

So tomorrow (today) is a very belated monthly visit to see Family Doc. There’s a ton I wanna have him fix, but I know the likelihood of any of it panning out is prolly nil. Pain issues need some serious addressing, insurance papers need to be returned and hopefully have been filled out, eating issues are frustrating me to death, my lungs are all crackly at night and of course there’s always discussion about next week.

The upside of tomorrow (not that I’ve noticed there ever being a downside to seeing Family Doc) is that we’re headed to Banff for Pasta Buffet night at the Rimrock Hotel with friends. I can’t believe we’ve been going without fail every year for the last…. Oh God, I don’t even know how many years it’s been anymore. It’s just that awesome. The annual “let’s see who can garlic themselves out first” is always great fun. The only disappointment is that I can’t eat as much as I’d like. Puking will probably be inevitable. *sigh*

Next week will be rather hellish:

* Tuesday is the interview with the Rheumatologist
* Wednesday is PFTs + Bloodwork (and more bloodwork on top of THAT bloodwork) and Chest X-rays(?)
* Thursday is ultrasound and then I hang around twiddling my thumbs until the actual procedure is done, which I’m told is scheduled around noon.

Lots of toys will be brought on Thursday to keep The Hubbs entertained (distracted?) during the whole period we’re there.

So yea, that’s the lowdown for the next week.

(Total unrelated side thought: We put up our brand spankin’ new Christmas lights up on the pillar outside the front door on the weekend. They’re awesome. They’re either going to cause someone to have a seizure OR it’ll encourage martians to stop by and say hi with all the insane blinkiness. Srsly.)

Just got a call from Research Study Nurse…

Wow.

Seriously. Wow.

I have an insane week coming up the week of November 30th.

I can’t believe this, but time has just flown by and I am 2 weeks away from officially participating in the PAH study. I didn’t think December would get here so quickly, but it has.

Dec 01 @ 100pm — visit with The Study’s Rheumatologist and do an “interview” with them.
Dec 02 @ 900am — do PFTs, do the requisitioned bloodwork I got in the mail + extra stuff I was just informed of o_O;;
Dec 03 @ 800am — get an ECHO and then hang out in the Research Clinic until my RHC with Hawt Doc. o_O;;;;;;

I knew in advance that there was going to be a lot of extra stuff associated with this study that I’d have to do before the actual RHC, but seeing it written down on paper seems rather daunting. There’s no great stress on my part in the early stuff (other than not sleeping), but we all know I am not a morning person.

…This will be interesting….

Things are rolling…

I called the Case Study nurse this morning and things are rolling.

She’s glad to hear I am interested in participating and will be talking to Hawt Doc to see when we can schedule baseline testing, PFTs, etc.

Once the initial testing has been complete and results fall within the case study’s parameters, I will be getting my neck stabbed later that week.

For the moment, it looks like they’re not booking until early September, so I have some time to contemplate this a little more.

OMG So funny…

Now I’m almost wishing I was still doing bat-straw.

FOR THIS ONE REASON ONLY!


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Suckiness in a Nutshell…

It’s been a long week it so seems…

I got continuous fone calls on Wednesday after my visit to the Derm about Thursday. I am finding it really odd to have doctors call me personally telling me information about my tests or they’ve contacted so-and-so and booked me an appointment for ohhh… saaaaay… the next day at 9am. This has happened a few times now.

I find it amusing that when I get calls from my family doc, he refers to himself in the 3rd person. He sometimes does this in the office in response to a question I pose that involves, “Have you received a call/results/ etc for XYZ?”

“Doug has not seen/heard that.”

So anyways, the Derm got me in to see a Respiratory Specialist for Thursday at 9am. I had only planned on being at the Lougheed for like… an HOUR. Do a consult, a little chitchat, try for the life of me to remember all the symptoms/problems I’ve been having.. no such luck.

I was there for SIX HOURS. When I arrived they sent me off to redo the chest films, the PFT (thank god omitted the blood gas), and after my consult, asked me what I was up to for the rest of the day…

That brought on a CT scan, a shitload of bloodwork (read: tested for 20 different things), a pneumonia vaccine (I am no longer ‘allowed’ to go vaccine free… it’s good for 5 years, and then I need a flu shot next time I see him. So not impressed). On Monday I’m booked for an echo. Other than that I have new drugs… lots of drugs. If I had a lot of drugs before, this cocktail shoots them out of the park. At last night’s count, I took 17 pills for 10 different drugs.

Sooo… basically the results of all those tests was kinda ugly. I now have a form of lung disease, I’m sure I could look up Dr.H’s exact wording, but whatever: The bottom 1/3 of my lungs has been scarred in the last 3 months. My heart is enlarged, and I’ve tested positive for 3 markers in the blood that they use to identify inflammation, and yeah. Dr.H has decided that my lungs are first priority.

Bat-straw would be great, but as we all know, breathing’s not optional (I suppose he’s right… and I do kinda like the whole up/down chest-boob action… you know, kinda like “staring at your navel” when you’re bored). So yeah, all my other appointments, should they come, are to be put secondarily to whatever’s gonna happen in the next few months if he has plans for me.

Bat-straw is ixnayed.

We’re doing the cytoxan. As of yet I don’t know if it will be orally or by IV… so I might still have a form of “bat-straw treatment” if it goes the IV route. I believe it’ll be at least a year’s worth of treatment when we start. Because of the speed and severity of SALLY, we’re going for the ugly-aggressive treatments. I am not quite at the point of needing oxygen but I’m close. He wants to avoid that and give me the chance to be like normal people again, so to speak — walk around the mall, do groceries, climb stairs, have a little fun.. that sort of stuffs.

I have no appointments for today (thank GOD), but I should give my family doc a shout so he can fill out my EI paperwork, get him up to speed… and yeah.

……

It seems to me that things keep getting from not so good, to bad, to worse.

I knew that there was something going on with my lungs and I thought it was pretty bad, but I don’t know that I could’ve thought it being THIS bad.

I had a second round of Pulmonary Function Testing + chest x-rays. (Have I mentioned how much I dislike doing a blood gas? Only 2 unsuccessful pokes today!!)

Things are not good. My lung capacity has dropped significantly in the last 3 months.

Told him what was up: digestion, skin, scabs… LUNGS… (lack of) Breathing… he wasn’t very happy looking.

I know this is a totally bizzare thing to say, but you know that ‘stereotypical look’ they give morticians in movies? That’s what the derm’s like… queer sense of humour and vocabulary but quite enthusiastic and knowledgeable. Anyhow, he wasn’t looking too happy. Kinda saddened actually.

So he’s not 100% sure what to do. Well no, that’s not entirely correct, he doesn’t know that pairing photopheresis with a drug called Cytoxan would be a good thing or even feasible. Cytoxan, a form of chemo, is apparently one of those drugs where it does have an effect, but you have to wonder if the outcome of taking it for a year, outweighs the side-effects…. like complete sterility.

He threw the idea out there so at least I would be prepared for a second round of discussions when he sends me to Lung Docs to get their opinions and as always, we’ll go from there. As it stands bat-straw is still a go. He didn’t seem terribly keen on making me sterile… or making me go through a year’s worth of evil nasty side-effects on the off-chance it would stablize things…

On another note, errrr…. yeah.. maybe later, I’m tired now and kind of depressed again.

Okay all is good.

We’re okay, there’s nothing to worry about…

I only need to be immediately calling the Family Doc if “the unlikely but serious side effect of unusual feelings of well-being/euphoria” happens whilst taking the sleeping pill.

So in the meantime, my current feelings of euphoria are allowed to go unchecked :)

Dunna nuna nuna nuna. Dunna nuna nuna nuna. BAT-STRAW!!! BAT-STRAW!!!

Side Note: Oh yeah, I haven’t had a round of ibu-fun + athri-ty since 730 am :)

Dunna nuna nuna nuna. Dunna nuna nuna nuna. BAT-STRAW!!! BAT-STRAW!!!

:P

I still don’t get this whole scheduling thing, but whatever.
We have progress…?

Monday Sept.11 — Be at clinic for 830am, they send me to angio for my straw, I recover in Day Med, then I’m apparently headed to the Bone Marrow clinic to get taught how to take care of my ‘new friend’.

Tuesday Sept.12 — Be at clinic 9am.

Wednesday Sept.13 — Be at clinic 1pm.

Thursday Sept.21 — Be at clinic 9am.

Friday Sept.22 — Be at clinic 1pm.

I have no clue what’s going on still… on the flip side I’ll only be hooped for work on the 12th/13th, the week following is my week off for “holidays”. Some holidays :(

Time for gratuitous breakfast shot from the Panenkoek Haus, because I can:

Warm blueberries’n’ice cream.