The 2nd Week After the Rack and The Changing of the Guard

Just to update everyone, it's been a rather uneventful week, other than my skin looking like someone shot a blast of buckshot into my face... We had some great advice from one of the nurses who had gone through the same treatment back in 2002 to use Aveeno's oatmeal bath, which Ki turned into a mask/poultice and rubbed that over my entire head a few times.  Now it just looks like I had a chemical peel and since I'm using moisturizer a few times a day, my face is all smooth (I was worried there would be some scarring... ).  I guess it's like I had a burn from the inside out (my mouth was very red and took a while to recover as well).

So other than my bought of temporary leprosy, a fair amount of coughing, a slow return of being able to actually eat (I gather it was my taste buds being less raw and my stomach thinking it was okay to ingest food), loosing 10 lbs in the end (I wound up actually gaining 11 lbs of water weight - my legs, arms, hands and feet all were super puffy, and taking water pills for 2 days, so I dropped 21 lbs after coming home so far).

But I think I've gone through this stuff... the turtle effect I think was what I called it... well long story short, I look closer to normal now, and am 10 lbs down from my weight when I went in for my first week of infusions.  Quite the diet plan.  Much thanks to my friends Angel, Dino and Graham for providing some easy to eat food during last week.


So my mother and sister came this last Friday to be with me for 3 weeks as Ki had to head up to the Corvallis area for his next rotation.  The scheduling worked out really well.  I'm sad I had to get seriously ill for my mom to finally come to Oregon (kidding... :)  but it's really good to have them out here.  My mom having gone through breast cancer back in 1987, she really brings a wise awareness of what matters right now.  It's also good for Ki to have something else to focus on for a bit, as I haven't been able to do too much over the last week (and he doesn't have to suffer through me trying to watch the French Open tennis tournament lol).


Thanks to everyone for the well wishes, and kind notes of encouragement.  My primary focus remains to continue to de-stress and build my strength back up so I can start the last half of this first round next week with as much drive as possible.

Recouperating at Home

Home front at last.

It took a while longer than I had hoped to ween me off the Neo and to have my heart working 100% on it's own.  I've been sleeping a lot, passing a lot of fluids and trying to get my appetite back (doing well enough on the fluids... not perfect on the appetite yet).

There has been a large amount of itchy peeling skin on my face and scalp.  We've been rubbing in an Aveno oatmeal creme all over my head to mellow the sensation.  I expect to be able to sleep better tonight thanks to Ki taking care of me :)

My hands are already starting to return to a more normal size, but my legs and feet are still hyper puffy.  I've decided to call this the turtle effect.  Scales, floppy paws and such.  It should become normal after 3 days of water pills.

From what I've been told the taste buds take a little bit of time to come back to normal, so certain things taste absolutely amazing (chilled fruit smoothies and mildly sweet cold drinks) and the 5 spoonfuls of mashed potatoes were divine!  Much thanks to our friends for providing some food - it's very helpful that Ki doesn't have to do everything so he doesn't feel overwhelmed.  

I'm sure once my stomach and digestion are back on track I'll be totally wanting to eat, but hopefully I'll drop some lbs between now and 2 Mondays from now.  The dosage they push into you for IL2 is completely weight dependent rather than a combination of your weight and your skin's total size (at least for high dosage IL2).

So here's to dreams of milkshakes and hamburgers lol :)

Saturday Night Apparantly...

is alright for fighting.  I'm back and a bit overly feisty (kind of channeling my father - he must have made one hell of a pain in the butt patient).  Apologies for not logging in since Wednesday.

I had some fairly strong response to the high dosage IL2 infusions which made pretty much become a sleep-aholic with intermittent bouts of coming back awake to read or watch Cougertown (read books that is... Cougertown might be fun for tv, but it wouldn't win any awards for story arc or depth of character.

The 1st round isn't over quite yet, but they're pulling down the supplements that have kept my heart beating normally, and then I'll be weened off of the oxygen. I'm not going to lie and say this was an easy week... in fact I've had just about every IL2 side effect that was promised in the brochure with the happy people in the sail boats (except for the sail boat side effect...).  I would not make for a pretty photo right now as my face has a bunch of little scabs (I swear I didn't pick at em!) and my lips didn't survive 100% complete either.  My hands and feet look like they attached another person's body as they're so bloated from excess fluid.  Apparently I'll get the "pee like an elephant" pill to start taking tomorrow which will take care of that in a few days.

The upside to having what Dr Curti considered to be a strong immune response, is well... basically I'm having a strong immune response and that's why I'm going through this process (at least the physical reason - perhaps there's some added metaphysical reason which will manifest in a fancy house on the coast or simply increased spelling acuity.)  So it's a good thing to have had such a quick and aggressive reaction.  The only downside is how they needed to bump up my blood pressure with "neo" (sp?) a bit too much and that caused me to miss the last few treatments, which considering my response to what I did manage to get in, the staff here continually reassured me that my body took what it needed.

So in contrast to my brilliant, if at times grumpy, father - I'm a pretty nice patient.  I suppose I can understand becoming frustrated, but I feel as if I've made some friends here, and expect to see them and send chocolates and stuff once I'm healed.

thanks for all the good support everyone - I'll update the blog again soon once I've managed to actually eat something (food... it's not a very interesting concept, even if the fried chicken commercial made me wish I could still eat yesterday :).

Doss

2nd Day and the Battle of the Blood Pressure

So last night I had my second infusion at 1 am and encountered and while taking anti-nausea medication about 30 minutes prior to the treatment really has worked to eliminate that side effect, I didn't quite get the heated blanket in time to overcome the shakes, so I wound up with like 30 blankets piled on me (okay, more like 6 but they were doubled lol). 

They had to give me demoral last night to get that under control, which lowered my blood pressure a bit too much, which could have caused them to delay giving my 3rd infusion, but I received an infusion which made my pressure level just enough to allow them to go ahead. 

The 3rd and 4th treatments (given at 9 AM and 3 PM) both have been shockingly smooth going.  This morning I pretty much had zero side effects and the afternoon infusion I managed to get Sister Mary Warm Blanket going super early and curtailed any shakes.  I guess getting the blood pressure a little higher really helped. 

Eating hasn't been a lot of fun, as the unfortunate onset of a fairly liquid output has started, but they're giving Imodium to help with that.  The hat is a real joy with that... bleah

Tomorrow Dr Lufkin will take back over for a day and then Dr Curti will be back on Thursday.  I can't believe it's been 4 infusions with such different effects.  I'm expecting a fair amount of new things, fevers, temps, but hopefully I won't have the whole package, or at least not all at once.  There has been a small amount of fluid build up already but I have some breathing exercise thing that looks like it was built by Duplo which will help keep the lungs clear.

I'm majorly lucky to have Ki here with me.  The staff seems to really like having someone in the room who xan help translate medical speak.  And I'm sure glad he's with me.  Chris Tso was so correct when he said Ki was my angel.

more to come - wish me luck tonight at 1pm PST.

1st day of IL2 Infusion or Please Poop in the Hat!

Okay so here's the faboo party-like excess I'm enjoying here at Chez Prov in Portland:

• I checked in at 7 am (we stayed up in Ki's future apartment - temporary future... while he does his work in Corvallis) here at Providence Portland.
• We (Ki, I and the staff) had all kinds of discussions with various nurses, cna's, oncologists and radiologists about the benefits of having a central line (for putting and pulling fluids this week) installed using 1 of 2 methods:
• Internal Jugular (easier to install, bad for movement as it sits in the side of the neck - and this is what they have usually done up here, so most preferred this method.
• Sub Clavian (almost as easy to install, but you have to ensure it doesn't puncture the lung... ) which the radiologist who installed the central line said was super easy and not an issue as long as you follow the collar bone super closely...  the big benefit is that you don't hit a large set of 3 tubes every time you move your head to the right.  
• We went with the Sub Clavian, and holy @#$% that stuff hurts... both hurt equally as pushing into a main vein just kind of hurts.
•  They had 5 patients check in this morning for IL2 treatment (mixed for Renal and Melanoma treatments), and quite a large number of other cancers needing chemo and radiation.
• We met with Dr Curti today and he started the ball rolling with a lot of questions and answers, and was very sharp.  So for this round I'll be with him rather than Dr Lufkin. 
• Apparently this is 1 of the 3 largest IL2 groups in the country (the other 2 are located in the NorthEast).  I decided I should ask Dr Curti about this as I wanted to get an idea to share with everyone (so I couldn't be in better hands). 
• So infusions started at 3 PM and will continue every 11 PM and 7 AM until hopefully I've been able to take 14 treatments.  Interestingly enough everyone here indicated not taking all 14 infusions isn't a bad thing, as they stop when the side effects become more than is safe, and it's more important that your body responds to the White Blood Cell boost more than it taking a while with minimal response (I'm still hoping for the full 14 rounds... grrr, ugh!).

For the mildly queasy amongst you please skip the next paragraph.

So the fun part of the title indicates a lovely process they require from their IL2 patients... they have to monitor anything you take in, and... anything you put out... so they have this lovely little toiled contraption which sits underneath the seat and ... well it's called a hat for a reason... yay for trying to not pass out while you hold your junk so it doesn't touch the stuff in the hat....

It really seemed as if I would have NO side effects initially after almost 2 hours had passed.  I'm kicking back in the bed with my legs crossed and reading... which I gather Dr Curti took to indicate I was feeling a bit cocky.  So he let me know even if I don't run into any side effects right away that I was for sure going to have some in a few days.  Well he needn't have jinxed me... shortly after I started to feel nauseous and dizzy... so I got a pill and then my body started to shake in all kinds of odd places, so I asked for warm blankets which helped get that action under control.  So other than a mild headache and slight body aches I'm better after playing "Sister Mary Warm-Blanket" (so named by the nurse who wrapped me up - see the photo).

Okay so super duper long entry on my first official day in the cancer ward and I've started playing Angry Birds... and I have a rad wardrobe malfunction built into my hospital gown so they can get to the tubes sticking out of my collar bone.

We watched the wonderful Soup Nazi episode of Seinfeld, and I ate a 1/3rd of my dinner.  So now I'm really excited to see what happens between 1 and 2 am (they come wake me up every 2 hours on the even hour to check vitals...  go sleep!).

I'll likely have a really gross peeling of skin after I get home... isn't that fun!

Take care of each other and I'll try to keep these entertaining and / or informative.

Doss

Monday at 7 am (or cancer ate my tv)

The first round of gut punches (IL2 infusions) every 8 hours for 5 days starts this Monday at 7 am (at least I check in then... I would guess they'll wait to get me all comfy before the 1st infusion of cancer ridding goodness starts).

And can I just say... friken cancer is expensive to have!  I should have opted for a broken leg, or kidney removal or something like that... Actually the irony is once I switched over to digital cable and started seeing regular broadcasts in high def, I decided upgrading my television wasn't a priority.  What luck that was... and I'm super grateful to have access to good insurance, although I'm waiting to hit that damn total yearly deductible!

There's actually a strategy I'm learning to paying medical bills...  and it's to not pay them right away, but also to not pay them at the last day.  They wait to see how much the insurance will cover and then hit you with the rest, but if you've already paid what they asked for, some places (such as Advanced Imaging here in Oregon) will write off what was left outstanding if it's within a certain amount.

Fair warning... these will either become rather bland and to the point next week, or I may wax all kinds of weird depending on my mental state :)  When they removed my original melanoma, I asked if I could have it bronzed while I was recovering from the procedure.  Unfortunately for my trophy collection, they needed it for testing.

Pulmonary Test Day

Today I'm getting the test for my lungs.  I had a call yesterday from the clinic telling me we're on track to start infusions this Monday, so I'm going to confirm once the lung test is done and everything has been received in the clinic.

The team in Portland sure does a better job inspiring confidence in person than they do over the phone... considering that they booked the lung test when I was in their office :)

breathe in breathe out

So tomorrow I have my pulmonary function test (checking my lungs) and after the results come back from that and the test I did last week we'll know if I'm able to handle the IL2 treatment.  I have every expectation to have no issues with either test.

In the meantime I've been really refocusing my head on the inner steel I know will be needed to get the maximum benefit from this process.  It's not an easy thing, once the doctors decide to try and "make sure" you're aware of what you're getting into, but what could they possibly expect me to do?  Besides, I could use a little kick start to weight loss right?

This week I heard the horrible news about a coworker deciding to take his own life.  I'm so mad about that, and even found it crept into my dreams last night.  For someone so vital and healthy to not value what he had reminds me of when I've felt lost in the past, but I've always known there are better things to do than stop living.  I don't know the inner pain he felt, but I do know the pain he's left, and it's not okay.

We have to all do what is best for us, and for me what is best is to live.

More to come...

tests tests and insurance waits...

Current update...

I'm going to do a fitness type test to see my heart response today and next week I have a lung function test to ensure I'm able to go forward with Interleukin 2 treatment.  And it takes approx. 5 days for insurance to approve IL2 apparently.

The staff at Providence in Portland are really great, and the facility is as nice as I might hope.  Dr Lufkin is going to be working with me as Dr Curti is really more focused on research these days (although he will be involved on the periphery I gather).  Once we're started Ki will be able to stay in the room and there is also a sleeping area he can sign up for which really will help for the treatments.

I am a little bummed as there is a test study they're trying to get approved (I gather they've done it once before) where they combine an initial single radiation treatment on a lung nodule which calls the body's immune system to that kind of spot, and then the IL2 makes your body more focused on attacking that particular kind of cell.  The drag is that they hope to start another group, but the earliest is likely to be in late June, and we don't think it's super smart to wait.

But that doesn't change anything from my initial thoughts so we're looking ahead to getting insurance approval and jumping right in.

thanks for the support,

Doss