It Came from India... in Pill Form

I just had confirmation from the Canadian pharmacy providing the generic Gleevec, and am waiting for an email from them with a form for the payment information etc.  Apparently once the amount is over $1,000 they require a written and signed form to be used rather than just have the information provided over the phone.

The pharm agent let me know the pills would be shipped from India which was a bit of a surprise.  Hopefully there won't be any significant delay getting these to me.  The site indicates a 3 - 5 week delay is typical for delivery.

Okay so I feel like making some crack about spicy pills, or curried cancer proteins (they're the best!), but I will refrain since my only viable (and most welcome) option is coming from a country I've wanted to visit for a long time.  And I suppose it would be best to have a self imposed moment of restraint for... wait for it... good karma :).

Who knows... if congress decides I can't order these anymore to protect an overdue patent in the states, I'll just have to figure a way to fly overseas to pick it up.  Of course, I would guess a trip to Canada might be more feasible, but I might as well imagine it... I wonder if there is a slow boat or merchant marine option to get to India and back?

----Mid Blog compositional update---

I've just received and filled out the form.  I had to take a photo and save it in photoshop as a pdf since I don't have a scanner, or fax machine at home.  Hopefully they won't have any issue with me sending the information in this manner.  It's a digital reproduction of my signature no matter how they get it, so it should be fine.

Homemade Pizza Sauce tip... never start your base red sauce using tomato paste... It's WAY too thick and flavor-wise overpowering, and takes too much liquid to smooth into something resembling what you want to use.  Crush up some tomatoes and start from there.  Just sayin'.  And I have to say thank you to the My Drunk Kitchen girl for making the last couple of weeks fun (a very funny video blog with the occasional nsfw vocabulary).

My best wishes to everyone, and as it's the end of the year allow me to wish you a (pick one... and only one... no greedy holiday grabbers...):

Merry Christmas, Happy Hanukkah, Happi Tenno tanjobi, Happy Kwanzaa, and for the rest of ya'll Happy Festivus!

Mixed Bag of Nuts

Okay

So I just got back into the Rogue Valley after my appointments up in Portland this week.  The PET scan results were a bit of a mixture of good and not great news.

• Good News - Lung and Lymph Node cancer mets did not show any growth.  Much reason to be glad with this result, as this is the first time we've seen that result after a scan!
• Medium News - the Lung Mets had a higher metabolic rate than in the previous scan.  Dr Lufkin indicated this wasn't something to get concerned about, so while I'm mildly inclined to think "say what?" to this, I will choose to take his perspective and make it my own.
• Lame News - the newer met that showed up in my front right hip area on the last scan unfortunately had some growth.  Not a massive amount, but it pretty much is like drinking white wine with a great steak... it's just not a good thing.

Dr Lufkin hasn't heard back from the drug reps he contacted for sponsorship help, so I showed him the Canadian pharmacy with the generic Gleevec.  After looking over the page Ki had sent me with the state of Minnesota's seal of approval (they went up and inspected a few specific pharmacies to ensure the medication was as advertised), he agreed that our next best course of action would be for him to send a prescription for me up to the pharmacy Ki and I'd chosen, and have them contact me for payment (he'll do this next week, after one last attempt to contact the drug reps).

So I'll be buying my medication at $1260 for 3 months of pills.  We'll be rescanning in 2 months after I start taking them to see the progress.  The irony here is I would likely have a $300 (ish) copay for any of the 3 drugs which we would be using if the insurance provider would agree to them as "appropriate for melanoma" so the out of pocket cost of the Canadian generic, while not cheap, isn't terribly much more.

Dr Lufkin did say that another round of Yervoy wasn't out of the question, but since we had the hip met grow some and saw no reduction in the other spots, Gleevec would be the best next step to take.  Now I do love me some Yervoy... so if I can get another 4 infusions, I'll be a happy camper (okay it was just so much nicer than IL2 that I have to love it more, and while it didn't deliver the maximum result, it certainly did help, and I'm happy about that).

Still waiting on final approval from the disability pay, but I'm expecting that in the next few weeks, so I should be able to get off the cards and pay some of them down to a more realistic balance...  Christmas gifts are going to be in short supply from me this year I'm afraid.

On a non craptastic note... 

I had a fun reunion with my friend JaneAnne Peterson (from college days).  We had lunch at a very Portland appropriate sandwich shop (green bean and beet sandwiches :)  and then a nice sweet bite at a pastry shop.  She's done super well, and we caught up on our families, friends and such.  

And I have a great partner named Ki still...(thank goodness), in case anyone wasn't quite aware.  He's working on his first rotation post teaching, and it's in anesthesia. Which apparently is a total gas (raw raw raw). 

Bottom line - still feeling quite well, and I'm planning to slowly get the gym back into my schedule now that I'm not saving my system's energy for the Yervoy to use.   I think enhancing my fitness at this point will be really helpful in a few ways.

All Clear on the No-No Zone Front

I just finished my follow-up appointment with Dr Ahmad (the surgeon who removed my new rectal tumors a little over a month back), and the healing process looks solid. Also he couldn't detect any additional oddities or bumps etc. in the area. He did ask me to come back in a couple of months to ensure I'm still clear, which I really appreciate. I'm glad to have a proactive surgeon for this.

While this isn't a "forever there will never again be another tumor disguised as a hemmhroid" announcement, it does mean I can reasonably expect to not have to deal with this again in the foreseeable future! You know somethings you don't mind learning about, and encountering more than once (ice cream, lasagna, waterslides, Crater Lake, a heavy metal Donna Summer tribute band...), but this is something I'd be just peachy to never deal with again.

The PET scan to see my post-Yervoy progress is slated to happen in a couple of hours, so in-between appointments, I dropped in on George and Tara (my fave and oh so fab IL2 nurses). It was very nice to catch them up on the progress etc. They both feel I should get a puppy post PET scan rather than a hamster... I'm going to ride that PET scan producing a puppy joke for a bit, so bear with me if you will :)

Also just one comment, if I direct you to check out the blog for the latest information, it's likely I've had a few folks asking about things which are already posted here that same day, and while I would never want someone to feel like I'm put out to go into the latest details with them, the reason I started this blog was to give the most up-to-date details with regards to my cancer treatment progress. So please don't be upset if I provide the link to you rather than retype the same information multiple times.

Much love to all, and I'll be posting the scan results this Friday as well as the outcome of Dr lufkin's (my oncologist) requests for drug sponsorships. If he isn't successful I'll find out his perspective on the Canadian pharmacy with the generic Gleevec.

A PET scan for Christmas

Just a quick update here.

Feeling decent and hoping to hear about the disability claim soon...

I finally got insurance approval for my next PET scan which will take place on Dec 13th along with my follow-up appointment for my surgery from last month.

Then on the 16th I'll meet with Dr Lufkin (my oncologist) to discuss the scan results and see what progress he's had with lobbying the drug companies for medication support. If he hasn't had any luck and the scan results are showing the cancer mets didn't respond enough to the Yervoy (I kind of think they should have been called Yankees or at least named for a baseball team with more success but I suppose Yankastatic Cancer would sound weird), we'll discuss getting the generic Gleevec option out of Canada.

Since I haven't spoken to him about this option yet, I can only assume he'd support it?

Cross whatever body parts give the most luck for the coming scan y'all, this one could be a really important moment. But if it's not good news we'll keep on truckin' (you might need to have been around in the 70's to get that one...)

http://en.wikipedia.org/wiki/Keep_on_Truckin%27_(comics)

Mineral Oil is Friendlier than Insurance Companies

Since my last update, most of my time has been spent hanging out up in Lebanon at Ki's apartment resting and recovering post no-no zone surgery.  I also had an appointment with Dr Lufkin (my oncologist) up in Portland last Friday, and faxed a book's worth of information to my long term disability provider.

First things - the surgery appears to have occurred without a hitch.  The surgeon emphasized using mineral oil after any food for the coming weeks, and that suggestion wins Dr Ahmad the ribbon for best suggestion post no-no zone surgery ever!  I've had super minimal bleeding (only on 3 mornings so far).  He indicated the sutures would likely start to dissolve, and some of them might even poke out as they go (can't wait for that action...) but I've barely touched the pain medication prescribed as the discomfort has been handled very nicely by Advil (and that's good as Oxyblahblah can cause a bit of constipation).  Hopefully I'll be able to discontinue the mineral oil use in a week or so, as the one downside is, when you gotta go... you better haul a@# to the potty!

Ki is moving out of his apartment at the end of this month, and will be spending the coming 2 months staying with a couple who are good friends up in Lebanon as he has a couple of rotations scheduled up north and his teaching stint is ending soon.  Then he'll be back home in Talent to finish up his last rotations for medical school with graduation in May.  Yay for Ki :)  I'm looking forward to having him back here, and I have to say, having him up north during this last 5 months has been really helpful in terms of me staying near Portland during my various pokings and cuttings, PET scannings (no puppies yet), table torture hooked up to IL2 machines and Yervoy juicing sessions.

The update from Dr Lufkin's follow up wasn't so wonderful as the insurance company has aggressively let him know they are not going to support the request to get Gleevec approval.  In fact, he was on the phone arguing with a Dr (read insurance company puppet) for 40 minutes, and the insurance Dr refused to even acknowledge the c kit mutation gene would mean my chances of survival would be bolstered via the Gleevec.  Bottom line... someone at Regence Blue Cross is going to get a nice bonus for denying my coverage on this.  Sorry to dip into a negative moment here...

We still plan to pursue a medication angle targeting the c kit mutation, but the strategy right now revolves around Dr Lufkin lobbying drug reps from a variety of companies to sponsor my need.  There are a handful of newer medications very similar to Gleevec that would also benefit from establishing success rates with patients that have been recently approved, so we have high hopes for success with that approach (Astrazenica is one of the companies, and they advertise for another drug they sell to contact them if you need help paying for the medication).  My mother has a dear friend from Florida, whose brother recently had a similar diagnosis to mine and his Dr approached the drug company and were able to negotiate such a reduction in cost that the insurance company agreed to pay for it.  This gives me hope to have a similar occurrence.

Also, one of Ki's rotation preceptors (the pediatrician here in Medford) helped him locate a generic version of Gleevec available from a Canadian pharmacy (the Canadian govt. allows for a smaller time limit on medicinal patents before generics are able to be made), and the cost for those pills would be $550 a month rather than $5,000... so we have that option as well, which is great news.

Crazy Crazy Crazy freaking roller coaster ride.... (it's a bit on the nutty or slightly insane side as well, but I didn't want to overdo it on the hyperbolic expressiveness... okay so I did, but whatever lol).

I would like to take this moment though to emphasize, the Yervoy is still cooking in my system, and we'll be getting another scan in a few weeks to a month.  Dr Lufkin has had a patient with Mucosal Melanoma have a complete rescission of cancer from Yervoy, and my preliminary PET scan (while yielding no cute puppies) did show a positive reduction in the amount of growth.  So while we're scrambling for the Gleevec (or newer less established similar drugs) it could be that the Yervoy will do the trick!

It was nice to be able to see my fave nurses from the IL2 sessions (George, Tara and Diane) for a few minutes after I did the running around to get medical records released.  I have very fond memories of them, and it's good to be in touch again via FB etc.

One Other important update is I finally heard from the long term disability office for our company's  benefits package, and they needed all the medical records that were newer than Sept 8th (since I sent in the application it's been over a month, and they didn't get it started immediately... ).  Fortunately I was seeing Dr Lufkin the day after the call, and I received everything needed to kick start the process and faxed it over to the provider.  I was also able to get the Oregon Clinic (the group who performed my no-no zone surgery) to fax over the records from their procedure, so hopefully getting those sent will make it so I don't have to wait 45 - 60 days for approval.  I'll be following up with the very nice (and yes she was very nice) lady who is handling my claim in the next day or so.

In the meantime, I plan to get some gear up for sale, and spend some quality time with the gear I'm not selling :)  I might ask for some help getting the word out with regards to what I have to move, as the economy is likely not super favorable to selling things like a digital mixer, or a Les Paul at a decent auction price.

Hugs - and don't be shy on the comments ya'll - it's nice to see em!

Here I sit... Ouch!

Okay, so apparently google didn't care for the amount of "cheek" I was discussing in my earlier attempt to update the blog and gave me an error message when I attempted to post... So here goes... With less "cheek" about my cheek area... :).

The procedure appears to have been pretty straightforward yesterday and the doctor removed the walnut sized tumor as well as another smaller one. The second one is likely the small roid left from my march procedure that Dr Harrie didn't feel needed to come out.

I was OUT like a light on my way to the operating room... And woke up in a different room wearing these fancy mesh underwear. You know it really is considerate for the hospital to consider my need to feel good about my appearance post procedure by fitting me with such sexy undies. I guess it's part of their holistic approach to patient care. :)

The only left turn with the procedure was my bladder deciding it wouldn't let me urinate, so the nurses had to use some torture device (I'm sure it was German in origin... Just sayin) to get me to pee.

Um.... OUCH!

Fortunately I was able to resume my normally scheduled bio evacuative procedures at 11 pm last night (and 1:15 am, 2:30 am, 3:45 am, 5 something am and a few times since). This is better than needing to go to the ER to request help urinating... There was literally a moment before my first self directed urination where I felt the muscle control come back, so it must have been shocked into a stupor during the anesthesia that was (and still is) keeping my rectal area numb.

On that note I fully expect to be quite cross with the universe as I start bowel movements... From what I recall post op last march, it took about 2 weeks for me to regain my composure when visiting the bathroom for a solid evacuation. Needless to say, I'll be focusing on soft foods for a bit.

I have a follow up with the new surgeon in 6 weeks, and hopefully the surgery will have removed the whole tumor so I don't have a sequel... And everybody knows, the third movie usually stinks. With the Yervoy chugging along in my system we're hoping it won't recur anyway.

And on the 11th I'll see my oncologist to check my progress on Yervoy, and discuss the insurance company's refusal for the Gleevec (for which we have an appeal started). Hopefully they just want us to give the Yervoy enough time to prove out.

Thanks again for all the positive thoughts, prayers and such.

Just the size of a Walnut...

Okay, so most recent update.  I've been experiencing some increasing issues with my movements since late August, and went to see my surgeon (the original from last March) for a follow up early in September.  He looked inside with a camera thingie, and what he saw seemed to be continual healing from the initial surgery, so not to worry.

As it's now late October, and the bleeding during movements hasn't stopped, and the recent PET scan had indicated there might be something going on in my no-no zone.  Because of this, I decided to have a surgeon consult up at the Portland hospital where my Oncologist works.  Not that I don't trust my original surgeon, but I wanted a fresh set of eyes, and felt having my treatment team all be in the same location could be beneficial.

It turns out, in the space of a little over a month, I now have a "walnut sized' tumor reappearing in the same spot as the original surgery.  As the locally based surgeon was looking to remove a hemorrhoid and not a tumor in March, it's pretty likely we just didn't get a clean and complete removal of that tissue,

So now I get to have a sequel of the original surgery, without of course the super nasty surprise that it's an anal melanoma tumor (old news... yawn).  Yay for me... but at least it doesn't really mean anything other than we just didn't get the entire original bit removed, and the walnut size, just means the skin around the area is bulgy cause of the location and such, not that I have an insanely large amount of fresh mucosal melanoma developing.

The surgeon up in Portland actually is pretty amazingly aware of what I have going on from an oncological perspective, and of course let me know just how special I must be to have such a crazy rare cancer (as well as difficult to treat).  We discussed the c kit mutation discovered in the genetic test, and he related a story of another patient with a tumor in the same area (different super rare cancer, but again, he let me know not as rare as mine, to which I cheered ... well not so much lol).  She also had a kit mutated gene marker in her cancer, and was able to use Gleevec with tremendous success, and it's been a few years now and her tumors are completely under control (except that she had to switch insurances as her original provider would only pay for 6 months of the pills...).

So next Wednesday I'll be back up in Portland getting my no-no zone cut open again, and will be sitting on pillows made of ice packs for a couple of weeks ... again.

On the upside, the surgeon felt this was likely the opportune time for this kind of procedure, since I haven't started the Gleevec (some wrangling with insurance and the hospital back and forth, but having a recurrent tumor should certainly help provide additional ammunition for this discussion).  Apparently with a more traditional cancer treatment approach (Gleevec vs IL2 or Yervoy), it's best to not have to recover from surgery while your body is dealing with the medicine.

For the record - I'm still bitter about never seeing any IL2 induced hallucinations nor having had the sail boat-effect promised in the treatment brochure back in June, but I'll settle for basic progress, and a few weeks of light eating...


And you know... questions you wish you would've asked would certainly include:

      "Now when you say size of a walnut, would that be with or without the shell...?"

 But since I didn't, we're going on the premise of shelled nut.  Just cause I prefer that idea all things considered,

Gotta get a Rascal first...

So I had my first post Yervoy follow-up CT/PET Scan a couple of days ago (Thursday the 13th) and met with Dr Lufkin yesterday (Friday the 14th - you know that date certainly rings nicer than the last day of the Templars).

The scan gave us pretty much the better end of the results we were expecting.  The mets/nodules have grown slightly and I have a couple of new spots in my right hip area.  Not really a jump up and down-and run to eat a big steak moment, but frankly better than what we saw in my follow-up scan from the IL2 treatments from July.

In the last scan the general growth rate had the cancer spots double in size (larger mets went from 10mm to 20mm in my lungs).  This time the growth was only 2 to 4 mm at the most, and the spreading was minimal, and not in any critical areas. 

To have had such a small amount of change vs. the last time shows that the Yervoy is doing more than the IL2 managed, yet should give us enough leverage with my prescription drug provider (insurance) to be approved for Gleevec pills.  Reading the description for Gleevec and how it acts on cells that generate the "kit" protein (which is the C Kit mutation in my melanoma we discovered), gives me a tremendous amount of hope for my cancer cells to be successfully targeted by these pills.

In the meantime I have a my next appointment with Dr Lufkin scheduled in a month, and am waiting to hear from a surgeon's office at the Portland Providence for another bum surgery... I've been experiencing some non painful bleeding during most movements, and the latest scan shows a little something in the area where my original operation occurred that removed the anal melanoma.  I can't tell you how thrilled I am to have the opportunity for another surgery this year... but it should be a pretty simple recovery I hope, and doesn't have me any more concerned than I was before (which just means we're at alert level cantaloupe... you know that just sounds better than orange).

Of course now I need to get on the ball and get a mobility chair (they were so much cooler when they were called "rascals" but oh well) approved before I get better.  I mean how cool would it be to have one of those thing for free!  :)

Bottom line... Still hanging in there and doing well. 

There once was a girl from Nan...

Okay so that was my attempt at an "attention grabbing headline" and I realize many may not get the reference, but that's just fine :).

I had my 4th infusion of Yervoy this last Thursday, the last for the treatment cycle. My first follow up scan is slated for the 13th of October, and the results will be discussed with the oncologist on the 14th. With Yervoy, it's common to not see results until after a couple of months have passed, so my expectations for progress at this point are low, but I do expect to see good things on later scans.

That having been said, I feel pretty good, and have to keep reminding myself when I have chest pains, that they're most likely not inside of my lungs, since we don't really have nerve endings inside of our lungs... A nice fact pointed out by my med student partner and my oncologist. Funny how so many little niggly things seem to build up over time. Fortunately, none of those have been in the side effect category so far, and since none have manifested themselves, they're unlikely to.

I would definitely recommend Yervoy to IL2 treatments... Even though going through IL2 at least makes you feel like you're actively involved in the process to get better... Which to be honest helps the kind of mind that I seem to posses with regards to being more in charge of my healing.

Feeling a bit like a boat with less of an anchor is a weird place for me, but learning to think in a manner to make that so it isn't a negative thing is proving to be a good exercise. I truly feel that I'll overcome this with the treatment that is coursing through my veins, as well as the option for the Gleevec. Just need to cross whatever body parts will help so insurance approves that at an option, as well as my disability pay benefit... Worrying about finances has added such a major weight to my shoulders that I've had to accept that not everything is in my control, and that I have to hope for the best.

So many mantras about fear management have gone through my head over the last couple of weeks. Fear truly is the mind killer. I have to thank the author Frank Herbert for his perspective on that. And whoever had Babs Bunny from Tiny Tunes quote the first line from the girl from Nantucket... That always makes me smile. And being able to smile and laugh is the best mental medicine I have.

Please continue to send good vibes, and wish Ki the best of luck for his residency interviews coming up for the next few months. He's done a great job with his first interview (which was in Long Island at NUMC), and should really knock any of the coming interviews out of the park.

3rd time is... Hell it's the same... But hello Ativan prescription!

So it's another super exciting and different experience at the ol' Yervoy watering hole... Well not so much, but at least they're lulling us to sleep with Bryan Adam's "Heaven" on the Dixie cup ceiling sound system. I'd rather hear "Run to you" and sing Tom Petty's "Refugee" over the chorus and wonder yet again if the rip off was something Bryan did consciously...

Update on the treatment plans btw. We'll be getting the scans started roughly 2 weeks post Yervoy rather than wait a month (so in one month). The reason for the change is due to the c kit mutation news we received last visit. Two things of note there are:

- It's an active c kit mutation which means it has a better chance to respond to the Gleevec pills vs. a non active mutation.

- Since we have such a strong and side effect-benign option if the Yervoy doesn't do the trick, we all agreed it would make sense to get rolling on the pills if we don't see a quick change to the size of my cancerous lung and lymph node junk.

And to top it off since I've had a couple of random (albeit mild in my opinion) freak out moments, Ki suggested I get some light Ativan to alleviate anxiety on the occasional nights where I might be having a tough time. The irony of the better Yervoy treatment is how much more time I appear to have to worry. It's not been a big problem, but I am glad to have something to take the edge off if needed.

And I have to express my deepest appreciation to the co workers who have so generously donated vacation time to help bolster my compensation while on leave. Please know I understand it's very difficult considering the timing of the changes at work.

Keep sending the good vibes in whatever form you feel will help (except I have to draw the line at chicken mutilations... I would prefer to not have to claim that I had no knowledge or consent to the harming of innocent animals while kicking my cancer...).

Second Infusion day

I'm up in Portland for my second infusion of Yervoy, and just was told my pathology tested positive for the c kit mutation. It's potentially good news as it means if the Yervoy doesn't slow the growth significantly or reduce the melanoma or get rid of it or make me finally manage to burp the alphabet non stop, then I can take a pill originally developed for Leukemia called Gleevec.

Nothing is a sure deal, but this really does mean I have very improved solid options for treatment, and it's been shown to work with melanoma that has this specific mutation. It's not really as cool as shooting lasers from my eyes or sprouting wings or even giving me the ability to change dirt to chocolate... But if it keeps me alive it's very welcome news!

I really needed to hear something good this week on the health front. The lengthy treatment time with Yervoy kind of snuck up on me earlier this week and I slipped and got a bit fearful. This should be super helpful and makes my outlook more based on actual medical results rather than completely self will focused.

In the meantime I have everything crossed to not need the stash of immodium To stave off side effects...

Interesting Day

Sometimes a piece of music just rips you... Toad the Wet Sprocket's "I will not take these things for granted" might not have been the best choice to enjoy while finally getting photos from a trip to Japan cropped and processed to post.

Saved by some random Tori Amos - always helpful to listen to her and realize the music is incredible and that she's sharing all that craziness in her head in her lyrics :)  Of her music I know, Scarlet's Walk (the entire album) never fails to bring a sense of wonder to me - even the songs that start a bit lamely just flow into amazing parts.

Probably should just put 24-7 spyz on and let that run my head in another direction.

To those here who were on the trip to Japan in May 2009 (I took too damn many photos... so it's taken a while... back off!  lol), those will be posted on flickr soon.  Learned a new trick in Photoshop to bring out details in pics when the weather and lighting wasn't cooperating that looks better than my pervious trick I think too.  I have to say the memories from those pics really is uplifting.

No new side effects yet

Just a quick update to report I haven't had any new fun side effects. Of course it's not really expected until after the second infusion which is 2 weeks away still, and even then the probability is low.

But for those keeping score my left heel decided it needed to peel off from the walking... Yay for a new layer of skin there! It's not really a surprise in hindsight, and just a tempoary setback on the walking program.

The increase in exercise comes at a good moment as Ki and I started having a homemade pizza night this last week... And you know nothing good comes from eating pizza dough, no matter how thin ya make it! Of course it's super cool to control what goes into the pizza and toppings and cheese... Not to mention it's way cheaper to eat amoeba shaped pizza completely made from scratch, and a bit more fun . Yay for learning to make pizza dough!

We also went to a play at the Oregon Shakespeare Festival courtesy of the Ob-gyn Ki worked with as her husband is playing in the pit for a production there. Yay for comp tickets to Loves Labors Lost!

The Machine Goes Chuga

So I was up at providence in Portland getting the Yervoy treatment sitting in a comfy chair and looking out a window with a nice view - what a difference from the IL2 therapy.  And apparently they were one of the places key in the development of this medication.  The name was based on "your voyage" which seems a little silly since I'm wasn't going anywhere for a few hours.  Maybe the sailboat side effect can finally show up.

A different nursing staff administers the Yervoy (Ipi) and the vibe is quite different since the treatment isn't similar but it's cool to be at the place where this stuff was developed.  

I have to thank my cousins and good friend Mary for the care packages they sent.  It inspired me to get a juicer and start pulverizing all the natural goodness out of a variety of fruits and veggies.  We even found orange and purple cauliflower which might be best not juiced since there isn't much liquid in them... Lol but they have way more vitamins and antioxidants than regular cauliflower.

The machine going chuga was the regulator pushing the Ipi (my liquid voyage... Usually you'd expect tequila or jaeger to be involved in that).  Perhaps it should have a name.  Bob seems to come to mind so there you have it.

The previous post's walking is going well and I expect to keep it up.  It would be amazing to actually get out and do some hiking once my legs are ready to do the up and downhill thing a bit better.  

Enough for now - back to looking at my planet and star apps .  The iPad Ki gave me for our 2 year anniversary is amazing for the kid still buried in me who used to pour over universe books and stare at the clear night sky.

One Week from Now

Okay I officially think 1 week in waiting-to-get-scheduled-time equals like a month in real-time...

Next Thursday 7/28 I'll start the Ipilimumbab (Yervoy) infusion plan. For those of you curious, this is a super new treatment for Melanoma approved by the FDA in May of this year. This will be a lot easier for my body to handle than the IL2 treatments, and since the Melanoma isn't spreading to form new sites, I'm right in the target group for this drug.

More updates as the day approaches and the liquid goodness is stuck into my arm (I hope that's where I get it... since it takes 2 hours for the treatment).

On the personal health side, I've started walking down the local bike path (I'm sure the hard core bike folks love seeing pedestrians there... ) as of yesterday. Of course 1 day is hardly a trend, unless of course you have a political agenda to push, and then it would constitute a commonly held belief and intensely popular dogma which the majority of people have held dear and should be considered as the direction for our societal needs. :)

Bottom line - I'm going walking further today lol.

So lets hope I don't develop any of the super low % of serious side effects which might derail my interest in getting my body healthy and moving again! Between that, processing photos upon which I've been sitting... and playing and recording music, I plan to ensure I'm picking up my mental as well as physical activity.

More to come!

Not the best news

Unfortunately the results of my scan showed the IL2 treatments to have been mostly ineffectual. The nodules are growing and Dr Lufkin indicated it was not going to help me to keep working with plain Interleukin 2 therapy.

While it was mostly bad news, we did find that there were no new cancer areas which means either the IL2 did that at least or well, I'm lucky. Either way it's a silver lining.

Frankly it really sucks but there are other options with just as much chance as what we've pursued so far. My value menu choices are many, and there are new drugs and treatments being developed for melanoma at a fair clip right now.

After a good amount of discussion we chose to go with a treatment of 4 infusions called Yervoy (tm). This will be far less stressful on my system (unless I am uber lucky and my colon goes insane... Sounds like a super time, and/or my pituitary gland shuts off. Now both of these side effects hit a very low % of folks, and I don't expect to be featured on any fiber bases cereal commercials over the coming 4 months so this is my chosen path. Both of these symptoms can be managed with steroids so maybe I'll get all buff if this happens... I know it's more likely I'd get the puffer fish face with no muscles but hey, nothing to be done about it).

The way this treatment works is basically similar to IL2 except it takes a different approach towards the immune system (operates on different receptors blah blah medical talk ...). In the words of my oncologist, it takes the brakes off the immune system. So more of my body using it's own devices to fight this thing. I guess the difference in physical side effects are to do with the pathway to getting the immune system up and running? At any rate, there have been good results with "incurable" ocular melanoma patients and such so my version of melanoma stands a good chance to respond.

If this doesn't work well enough, we have biochemotherapy (combines IL2 and chemo... now that sounds lovely), 2 pills that have shown good promise, the possibility for my melanoma to be 1 of 2 genetic variants which they have specific treatments developed (this would be good) and some other things which we didn't discuss

Both Ki and I feel very upbeat about my choices and the future. I am resolute in my will to get this under control. There are options and we're going to keep fighting the good fight. He'll be back in Beirut (the nickname I've given his apt in Lebanon) in order to teach the students here at his school's campus this Fall, so I'll be coming up to Portland for the infusions and spending time between the place up north and the house in Talent during this process.

I wish it were better news, but rather than let my body swim in depressive chemicals and get down about this I'm choosing to focus on getting my body healthier (diet and exercise) so trips to the gym and focusing my mental state on low stress with fun activities.

Please continue to pray, light candles, meditate and send good energy, sponsor underprivileged children and those insanely cute animals (yes tigers and polar bears are cute) as I do believe it will all help. Much love and appreciation to all. I'll continue to update the blog through this process.

next step

CT scan follow up to the first round of treatment tomorrow - I'll meet with Dr Lufkin on Thursday to discuss the results. 

more flowers... :)

thanks Ralph - the flowers are very nice and I really appreciate them and the stuffed bear.  It feels like it's been forever since the last infusions but really it's only been a week and a half.  Here's to finding out what the progress is in a few weeks!

flowers :)

thanks to my friends at AVID for sending the lovely flowers.  They look great and it's a very sweet gesture!

Home after Cycle 2 (of Round 1) and What did I sign myself up for...

So I'm home again (we got home on Sat night, a day and a half ago) and recovering from my second cycle of infusions.  Finally got the terminology right ...

1 Round includes:
2 five-day cycles of infusions
and the time off between them (2 weeks then 4). 
then a CT scan to determine if the best course of action of another Round.

My mother and sister are here helping me recover before they head back at the end of the week.  I was lucky in that Ki was able to spend a couple of evenings and stay over night in the room with me up at the hospital.  It's a big deal for me to have their support right now, and I haven't forgotten all of the offers to help drive me up and to bring me back from Portland.  These treatments can go up to 6 Rounds... so believe me, I just may call on you for some of that help (rides, chow etc.) so many have graciously offered.

They say cycle 2 is supposed to be somewhat similar, if not a little easier, than cycle 1, as your body more quickly responds.  The immune response remembers your reaction last time, and that seems to have been the case for me.  It seemed like everything I experienced on cycle 1 came at me about a half or a full day quicker, which meant a pretty quick dive into the side effects (and I still didn't get the sail boat, and apparently someone else gets a Brad Pitt side effect that I don't have either... hmph!).

I seemed to have a slightly quickly recovery time, but Dr Curti felt I was having a strong enough response to spare my body at the same point as the first.  Little things like stupid blood pressure, kidney and liver function etc. seem to matter, so here I am with my face about 33% burnt to a flaky yucky crisp (which is about 25.34% less than last time if you're counting).  Of course I also wasn't really feeling up to blogging at all this time, hence the 1 week delay.

There were a couple of moments when I seriously felt like it was a bit more than I was expecting to deal with, but knowing that I was doing exactly what I was supposed to be doing, where I was supposed to be doing it really made an impact.  I'm certain all of the positive energy being sent my way is helping.

My mom and sister were super amazed at the staff as well.  They indicated Dr Curti and the nursing staff were so good that it put their minds at ease for me to be up there.  It's a good thing we baked cookies (or rather I asked my mom and sister to...) as a coming back for treatment hello kinda thing :).  I'll have to think of something clever to take up next time.  Maybe I'll label them "special brownies" and see who takes more than the others... lol  This is the Pacific Northwest after all.

I would apologize to all in my company who are seeing their insurance rates go up... it's probably from this treatment... and if so I'm claiming that I didn't write this, rather that my account here was hacked by that classay senator Hot Dog from New Jersey... And if you're uncertain as to IL 2 treatment being correct, than explain why the damn Price is Right theme kept creeping into my head?  Mom said we should go to see a show of it once I've kicked this thing out of me, but I don't think Drew Carey really has the same panache as Bob Barker (or those hilariously creepy models they had that kept getting older ... Janice or whatever?  Price is Right Zombies is what they were!  :)  Okay okay... just kidding... I think it would have been really funny if the models stayed up to the same age as Bob Barker...

And to those of you wondering what the Brad Pitt effect was, it's related to the delusions and hallucinations some people experience during treatment.  I'm not lucky enough for this to bang around my brain like some others apparently (it's always a possibility, but according to the nurses, if it hasn't done so by the 2nd cycle it probably won't), but one of their patients always knew she had been given enough infusions on her cycles when Brad Pitt would appear in one of the chairs in the room.  Same Chair, same Brad etc.  Of course I wanted to know if we were talking Mr & Mrs Smith hot or girly long hair pretty Brad.  They weren't sure.

I did have a handful of seriously odd vivid dreams.  The last was reverse black and white (similar to Frank Miller's "Sin City") and the hilarious thing I remember was going into a seedy part of town for pizza and pasta with meat balls... and everything was black and white but the food (hey last time it was doughnuts in a cartoonish dreamscape of the Paris casino in Las Vegas.)  Probably was a sensory memory from the amazing smelling pizza leftovers Ki had from my mom and sister's Thursday night dinner.

And thank you to the brave souls who came to visit during the week (3 friends from Portland and a couple of Ki's best friends from medical school) and a special note for M smuggling Ki a couple of brews after his stressful week.  I think it was almost as hard for him to not be there as it was for me to be getting the spa treatment (we'll see if that term sticks... my skin hasn't regenerated quite yet, but we're working the Aveeno face mask that Ki developed already). 

Of course it goes without saying... the insane Chewbacca stuffed thing was hilarious and all the nursing staff thought it was quite rad (very fun bday gift Kyle!). 

One more thing - major congratulations to my man - Ki passed his medical boards and has no more testing to take before he graduates next year!  I'm super proud of him and how he's managed to do so well with the tough things being handed to him. 

Time for the 2nd Cycle of Infusions - or Happy Damn Birthday!

Now to those of you who may feel I'm not absolutely thrilled to celebrate my illustrious 43rd birthday on the day I check in to start the 2nd week of Interleukin 2 infusions... realize it's all a matter of perspective.

There really is no other way to view this than for me to be super grateful to be on my current path, getting the best treatment possible, working with such great folks who have given me so much support and reassurance to not be worried about the office, and my amazing family and friends who have been taking care of everything I need and who keep expressing the willingness to do so for the coming months.

Plus it's kind of funny to see the attempt to hide to horrified expressions on the various hospital folks who notice it's my birthday when they're asking me for my information :)

In the immortal words of Carrie Fisher ... it's not over yet!  God I love to spew random Star Wars quotes (here's a good one for an iffy first date... "You came here in that thing?  You're braver than I thought...")  

Man I do have to say... ouch to getting a main line catheter stuck into your right shoulder!  Although this time Dr Mann (what a great name) did a better job than Dr Mc Beardie did last time (no complaints as he didn't deflate my lung!).  It's just not a place where you should ever feel ANYTHING.  That's what our dermal layer is for... touching.  Not the stuff on the inside man... (or rather ... Dr Mann... lol).  Dang it - I should have acted all Cheech n Chong on him while he was giving me that lovely sensation.  Yo Dr Man - it's Dave, open up, I got the stuff!  heh

My mom and sister are here for this week, and let me tell you... if you're ever fortunate to travel anywhere with the 2 of them make dang sure your car has room for a lot of groceries.  You'll have to stop and hunt for the "special" popcicles (you know... David Lee couldn't eat brown M&M's cause there wasn't a surprise in them - Liz has her own special popcicle flavors that feature no surprise :)  Oh and hotel pull out beds are just as comfy as they ever were... We drove up last night and they're staying in a residence inn just down the road from the hospital that gives a discount to people with family being treated.

I asked them to make some of my mom's yummy chocolate chip cookies to bring in for the staff in the cancer ward, and the came out great.  Love my mom and sister!  (that's more of a statement minus the who, or rather has an implied subject in place of the missing 'I,' rather than an imperative or command form usage indicating all who read this should indeed love my mom and sister - although that's not a bad idea.)

My nurse managed to secure a bed extension and a support mat for the bed (we found out about the extension on Thursday of the last treatment - nice timing).  Apparently they run in short supply so it's a good thing I asked early.

Well wish me luck and know that I'm excited to get my second cycle of IL2 pumping into me.  I mean hell, I managed to drop 10 lbs, get what resembles a chemical peel on my face and oh yeah... continue killing this stupid mystery melanoma bits that's in my lungs and lymph node.

And everyone enjoy the good weather that's starting - I would like to get out into it, but that wouldn't be the best advice at the moment :).

Until later,

Doss

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

Waiting to head to Portland

I'll be heading up to Portland this coming Tuesday to meet with my "step" Oncologist (I'll be starting with one and moving over to Dr Curti starting the 9th).  My expectation is to discuss the treatment options and begin the process shortly after, or on the following morning?  

You know... hospitals could really do a better job letting us know what to expect in order to plan.  But hey - these guys are busy right?  hmmm My plan is to not be a pain, but to be fairly forward with this meeting.   

Everyone here at MF has been super amazing in helping me prepare.  Hopefully I've done what I need to do for them to take care of my areas while I'm out.  

But enough about that... anyone see the latest episode of RuPaul's Drag Race?!  :)  More to come..