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!
Monday, November 14, 2011
Thursday, November 3, 2011
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.
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.
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