Mar 28

A Bit Of A Medi-Lapse

3-28-15 – This past month or so since my last update had a few notable things happen.

The first is that my daily chemotherapy drug, Imbruvica, stopped being delivered.  To recall the situation, the drug costs about $11,000.00 per month, which is kind of expensive.  Since I don’t have anywhere near that kind of money, Johnson & Johnson kindly take care of it through a patient assistance program.  Thing is, they approve for a year at a time, and my first year with them was up about a month ago and surprised me.

I contacted the folks at J&J and they sent me the forms for my oncologist and me to fill out, which we did, but it took some time to get the forms, then to get the oncologist to fill them out, then to get them back to J&J, then to get them approved, then to get the deliveries going again.

So, all in all, I was off my daily chemo meds for about a month.  It’s all fixed now though, as I got my first monthly bottle of them yesterday and started taking them again.  I made sure this time to put a reminder in my Outlook calendar a month BEFORE the year is up to contact J&J ahead of time so that there won’t be a lapse next year.

I also saw my regular doctor again since last time I updated.  We went over all the basics, and talked more specifically about the high cost of the breathing meds Spiriva and ProAir HFC (Albuterol inhaler).  The Spiriva was just way too expensive for me to afford every month, so after looking at the Humana drug formulary I emailed her after my last visit, she recommended that I switch from the high-costing Spiriva to a less costly albuterol delivered via a nebulizer machine.

My mom has the machine and is very familiar with everything about it, having used it extensively.  She said that it’s kind of a pain in the behind and that it didn’t work as well nor as conveniently as the Spiriva.  She said she doesn’t even use it anymore, and that I could take it if I wanted.

Since then however, the cost of the Spiriva and the Albuterol inhalers I use dropped from a total cost to me of over $300 per month to about $70 per month, now that I’ve got my $300 yearly premium paid to Humana.  Bottom line: I can now afford the Spiriva, so will forego the nebulizer machine.

I think at this point it bears repeating: Someday, when I’m king of the world, the insurance companies are going to be completely abolished.  Single-Payer for all will be my declaration!  So let it be written.  So let it be done!

Then we got to the issue of my blood pressure, and I said, “we’re gonna have a fight now.”  I told her that I just wasn’t buying into any of this business about me having high blood pressure.  I’ve been taking it at home pretty regularly now, and it goes between 120 / 72 to 150 / 78, but mostly in the lower ranges.

Not too long ago, recommendations for generations by medical professionals were that one should try to keep their blood pressure below their age+100 / 90.  That would put me at 156 / 90, and I’m well within that.  Then the drug companies put together studies that showed that everyone should be at 120 / 90 or take meds to lower it; Meds they conveniently make and sell.

My doctor disagreed that the drug companies had an agenda associated with those studies.  I subsequently disagreed with that analysis of the situation, armed with the knowledge that all corporations have an agenda, and the drug companies CERTAINLY have an agenda.  In concert with the insurance companies who also have an agenda, I don’t buy half the BS they’re shoveling, unless if jives with reality in a big way.

She pointed out that it’s totally up to me if I want to ignore her advice and not take the drugs to lower my blood pressure, but that she had to advise me that if I didn’t it would increase my chances for heart attack and stroke.  I pointed out to her that I have had relatives who smoked, drank, did drugs and ate fatty food slathered with lard who lived into their 90’s, and a nephew who was apparently fit as a fiddle suddenly die of a heart attack at age 18.  That said, I’ll take my chances, and if I die of a something related to my supposed high blood pressure, she should feel free to say, “I told you so”.

Then she let me know that she’s leaving her practice and that the office would get me hooked up with another doctor there, possibly the one my mother sees.  I’ve heard a lot of good things about him, so that’s fine with me.

She also scheduled me for another set of blood work to be done in about a month, on April 20th at 8:20 AM.  They’ll draw it there at my doctor’s office, rather than at the hospital like we did last time, and I’m to fast for 12 hours prior to the blood draw again.

My sister-in-law Trisha passed away also since my last update, which was a very sad thing.  She’d found out not long before that she had advanced esophageal cancer.  We talked on the phone about her condition and her fears and my own 14 and a half years with the disease, and how important it was not to lose hope.  She said she knew something was wrong for a long time, at least a year, but put off going to the doctor until she just couldn’t stand it any longer.  Unfortunately, by then it was too late to do anything about it.

Attending her funeral and seeing her and the family there hit me harder than I expected, and it really got me thinking about how important it is to let those we love know it – to tell them in words just what they mean to us, and not assume they know.  Sometimes in our busy lives, we forget how much that means to one another.

I suppose that’s pretty much all there is to note on my medical condition since the last update, so until next time, take care and try to make it a point to tell your loved ones what they mean to you.

Feb 19

Clear PET, Crippling Meds

2-19-15 – I had my PET scan as scheduled, and saw my oncologist yesterday about it.  She said it was all clear, went over the day’s LABS, gave me the regular exam, and said she’d see me in another 4 months, on Thursday, June 18th.  So, still in remission here.

Today, I saw my regular doctor and told her about how the high blood pressure meds she put me on crippled me BAD.  Soon after I started taking them, I started getting aching muscles and some cramping, but I didn’t associate it with the meds.  I’ve had muscle aches and pains and cramps before, so I didn’t pay much attention to it.  Over the next few days though, it got worse.  A LOT worse, until it was unbearable, morning, noon and night, in every muscle of my body.  That’s when I finally put two and two together and guessed it was the new meds doing it, and stopped taking them.  About a day later, I was back to normal.

After that, I borrowed mom’s blood pressure cuff to start checking my supposed high blood pressure and keep a log of it.  About a week later, I bought my own blood pressure cuff to do it, and returned mom’s to her.  My oncologist and my medical-knowledgeable family members all said when looking at the log that it’s a little on the high side, but nothing they’d be worried about.  My oncologist in particular said it’s what my BP has looked like throughout my medical history of going on 14 years dealing with my cancer.  In all that time, NOBODY, not ONE doctor, has been worried about my BP being too high.

When I related that to my regular doctor today, she said they probably just weren’t worried about my BP because they were concentrating on my cancer instead.  Frankly, that makes NO SENSE to me.  Surely, they would have dealt with it if it were a concern, and it’s not like they were taking my BP hundreds of times over the course of my visits for no reason.

It was obvious though that she wasn’t interested in anything I or my oncologists over the years have had to say about it, and was more than willing to argue that I have high blood pressure and need to be on medication for it, just not the meds she prescribed first.  So, she’ll try a different one, and I guess we’ll see if that one makes me go blind or something.

She also said I need to watch my sugar intake.  Not that it’s high or a concern, mind you, but compared to the LABS she got after having me fast, compared with the LABS I got yesterday, she sees that I should chill on the sweets.  Ummm… Okay…

Tell you what else.  I hate the office procedures there too.  Just the way they have to have me recite my whole name, birth date, address, phone number every time I go there scrapes a nerve with me.  Okay, name and birthdate is common, but why all the rest?  If you really need me to ID that I’m REALLY who I say I am, just ask for my damn license or something!  No wonder my blood pressure is high by the time they get me into the exam room!

She asked how the Spiriva is doing, and I had to report that I’m REALLY liking the way it and the Albuterol are making my breathing SO MUCH easier.  BUT, I told her, if it’s going to keep costing me $300 per month, that’s not going to happen either.  We then had a chat about my prescription coverage, tiers, percentages and other insurance-ese medi-gobble-de-gook, and she suggested I get a copy of the formulary to her, so she can see if she can find suitable meds that won’t cost me an arm and a leg.

I emailed it to her after I got home.

Of course, that was no easy thing either.  First, I go to my Humana Prescription coverage page and log in.  Then I search and search and search and search some more, looking for the formulary.  Of course, there’s no search feature, so I try “Help”.  Nope, nothing there to help me find it.  How about Frequently Asked Questions?  Nope, nothing there either.  Okay, Contact Us!  More directions to look here and there – still no help.

Eventually, it’s phone number time, and I make the call.  I spend the next 10 minutes trying to navigate my way through a bunch of recordings, since none of the options have ANYTHING to do with how the HELL I can find the formulary.  I finally manage to get to an actual human being, and within 30 seconds, there’s a bunch of static on the line, and I get disconnected.  AAAARRGGGHHHH!!!!!!

I call back, and again wade through 10 minutes of mostly useless “informative” recordings, and finally get to another human being.  Completely exasperated by then, I ask her if she can possibly call me back if we get disconnected, and tell her why, since it just happened.  She says she can, and that she has my number.

I explain to her what I need, which is a link to the formulary on the website, and she says she can send it to me in the mail.  I ask how long that will take, and she tells me 14 days.  I ask if there’s any way I can get it sooner, and she tells me that a web specialist can help me get it on the web site, which is what I asked for in the first place.

She’ll just need to transfer me to that department.  At the very thought, I get anxious about the call getting dropped again (today isn’t the first time calls have dropped while I’m on the phone with Humana, by the way).  She assures me that she’ll make sure I’m connected before she’s done, and will call me back if it goes haywire.

A minute later, and I’m on the phone with a web specialist.  I explain the situation, and she guides me through the web site, click here, click there, click on the dropdown list, now there….  Oh, wait…  Ummm…  I just realized something… Go back to the beginning and click here instead.  Now go down to there and click that.  Okay, now click… etc., etc., etc.

Eventually, I get the formulary, thank the specialist, and hang up.  Then I copy it to my computer and email it to my doctor.

A few minutes later, I get an email from a company that watches my doctor’s email and weeds out spam.  It says that I have to verify that I’m a real person, and to do that I have to click on a link in the email.  I do, and it takes me to a web page that says it can’t find the web page.  AAAARRRGGGHHH!!!!

I track down the company that sent the email, find an email address for them, and send them an email with the email they sent me attached, saying that their website link doesn’t work, and what do we do NOW to get my email with the formulary list to my doctor, at her request.

A few minutes later, I get an automated response email from their company saying that they don’t actually read or deal with emails from that address until they have a staff meeting, but if I need assistance sooner, I can send it to one of two other email addresses they have.

I send it to both.

A few minutes later, I get another email from them, saying that they passed my email on to my doctor, and I should follow up to make sure she got it.

I would, but NOBODY IN HER OFFICE ACTUALLY ANSWERS THE PHONE WHEN YOU CALL!!!!

It’s always a recording with a menu.  And if you drill down to an operator, it’s someone who doesn’t seem to be able to actually connect you or answer your questions or anything else – all they can do is transfer you back into the system, where you can leave a message, but if you’re lucky and very specific, they can transfer you to the phone mail of a specific person or department, and THEN, if you leave a good message, you may actually hear back from them later in the day, or tomorrow maybe, or …  you know… whenever.

Did I mention that I hate that office?  Good.  Because I do.

I mentioned the phone thing to the lady I checked in with today too.  She reminded me that I have a $50 payment to make for the last two visits, after Medicare.  I said, “Oh, yeah…  I tried to call and pay that by phone, but nobody here answers the phone, so I couldn’t do it.”  It was the truth.  As soon as it came in the mail, I tried to call in and pay by phone, but it was a no-go.  Kinda makes you wonder why they even put the phone number and a “pay by phone” message on the bill, since you can’t actually do that.  She just screwed up her face and shrugged a little like, “do I look like I care?”

Speaking of things you can’t do, when I went to try to figure out my doctor’s email address, I pulled out the handy-dandy appointment card I got today that says my next appointment is Thursday, 3-19-15.  On the other side of the card is stuff like the name of the place, a nice logo, phone and fax numbers, and the website, where I figure I can go to find her email address.

Unfortunately, when you go to that website address, it just says, “This web site is no longer in service. We apologize for any inconvenience. Please contact your physician’s office for more information.”  Cool, huh?

Did I mention that I hate this office?  Good.  Because I do.

Anyway, I had a little bit of a milestone a couple of days ago, on the 17th.  3 years on that day since I quit smoking.  I actually had my last cigarette the night before, but I count the 17th as my first day as a non-smoker, so it’s an anniversary of sorts for me.
BuckSmoke3YearsAnd that, my friends, is pretty much the whole update of what’s happening with my medical junk for the moment.  I’ll be back again if and when there’s anything new!  :)

Jan 23

Long Time, No Update

1-23-2015 – Well, gee whiz…  Time flies when you’re having fun, I guess!  Can’t believe it’s been over 3 months since my last update!  Where does the time go?!  It’s been so long, I don’t even remember all that’s happened, but I’ll try to hit the main points.

I guess the first thing is that I finally took my oncologist’s repeated advice, and got a regular general practitioner doctor to take care of my medical issues that aren’t directly cancer related.  As far as I can tell, she knows her stuff, and I get along with her, which is important.

The first time I saw her I had a severe flu kicking my butt, even though I had a flu shot this year, as always.  She said it was unfortunately a new strain that the shot didn’t cover.  I got a shot, some pills, and a few days later I was feeling much better again.  The second time I saw her was this past Monday for a physical.  Prostate’s still good, but the blood pressure was a little high, so she put me on a prescription for that.  She also prescribed me some inhalers for my COPD, so that I can breath better.  Just since Monday when I started using them, I can tell they’re making a big difference.  I haven’t been able to breath this deep and really feel like I’m filling up my lungs with air in years, and it really feels great.

My Medicare started in October, and those around me with knowledge warned that I’ll want to get a supplemental prescription coverage plan.  They also warned that inhalers I’d probably be prescribed can be expensive.  I went to the Medicare web site online to find out about it all and it was just a bunch of insurance-gibberish that I couldn’t make heads nor tails of.

So mom suggested we go down to the Senior Center in Petoskey and talk to those folks to get some advice.  She’d been there before, and they helped her.  I was all for it, so she made an appointment.  When we got there, a very helpful fellow got my information and set me up with a prescription plan with Walmart Humana.

He also set me up with a hospitalization plan with Blue Cross of Michigan.  For about $123 per month, they’ll supposedly pay any and all hospitalization costs, should I need to be hospitalized for some reason.  That seemed like a pretty good idea since I’m not getting any younger, and a stay in the hospital can be a whopper of a bill.  Better to pay a buck and a quarter per month and not have to worry about it, I think.

When I went to get the first inhaler prescription filled though, they said at the counter it’d be close to $300, and I was like, “WHAT???!!!”  So I walked away and called my doc’s office, and explained that we need to find something less expensive.  They called in a different prescription, and that one was only going to be a couple dollars less, so I walked away from it all, determined to get some answers before trying to continue.

I spent two hours on the phone with Humana trying to get a straight answer about it all.  After being accidentally hung up on and doing the dance through the whole gamut of prerecorded messages when you first dial in for the second time, I finally got transferred to a fourth person and, after repeating the whole story for the fourth time, got the straight dope on what was going on.

Deductible.  I have to pay a $320 per year deductible before they take care of my prescriptions.  And THEN, it’s still subject to the pharmacy cost AND what “tier” level Humana has placed that drug on.  So, For an inhaler that costs, say $800 and is on “tier 4”, I’ll still have to pay 35% of the total cost, which is $280 out of my pocket.  Like I can afford that.

My daughter and the doctor’s office suggested I go to a website called “goodrx.com” to find the best deal, so I did.  Walmart was only a couple dollars more expensive than the cheapest pharmacy in the area, and when we’re talking several hundred dollars, I’m not terribly impressed.  In any case, the website says to use their coupon for best savings, so I print it out and take it with me.  I also have a prescription discount card I got from the doc’s office.  I take all of it with the prescriptions to Walmart, and ask how to work it.  They ask me which I want to use, the Humana, the coupon or the doc’s card.  Then they explain that it’s one or the other, you can’t use them in combination with one another.

So, I decide to pay the Humana cost and get my deductible for the year paid off, so that it can stop being a thorn in my wallet, and maybe then I can get a better deal somehow.

It’s all a bunch of insurance bullshit, designed so that the average person has no possible way to successfully navigate it in a way that will actually benefit them much.

I mean, I get it.  I’ve always got it with insurance companies.  Their model, like any business, is to take money in and not pay it back out if at all possible.  It reminds me of the scene in The Incredibles where the little old lady is in the insurance office getting shafted, and Mr. Incredible gives her the information she needs to get through the maze of crap to get some real help.  Then his boss gets all worked up because the customers are penetrating the bureaucracy, which of course is bad for business.

Anyway, I’ve got a month’s supply which gives me some time to figure it all out better with my doctor, the deductible for the year is paid off, and I’m breathing much easier.  But just so you know – When I’m king of the world, my first order of business is to burn the insurance companies to the ground and implement Single-Payer for everyone.

My next appointment with my doctor is in about a month, on 2/19/2015.

I had another colonoscopy since my last update, which turned out just fine this time, and was told I won’t need another for 5 years.  I had a couple more visits with my oncologist in that time also, with nothing new to report from them either.  I’ve got a PET Scan scheduled for 2/5/2015, just about 2 weeks from now, and then I’ll see my oncologist again for a followup to it on 2/18/2015.

Aside from the medical stuff, I also bought a car, a 2002 4WD Jeep Grand Cherokee that runs great and looks pretty good too.  Because I always drove company vehicles throughout my career, it’s the first car I’ve owned in about 25 years.  I put it off for a long time after retiring, like over 2 years, but it was finally time, and I’m really glad to have it.

I also bought myself a big screen 65″ 3D TV for Christmas.  I haven’t owned a TV of any size in several years, since my last one was stolen from a U-Haul storage in Dallas, Texas back in 2009 or 2010, or whatever it was.  Honestly, I’m not much of a TV watcher so it didn’t really bother me not having one, but watching a 3D movie from time to time is fun, even more fun on a big screen, and it gives my grandkids and other youngsters who visit something to watch.  I still can’t bring myself to get cable, as expensive as it is for a crap load of stations with nothing but crap, and all the stuff I’d actually want to watch on “premium” channels that cost extra.  For now I’m perfectly satisfied with my NetFlix, Amazon Prime, YouTube, and other internet-based offerings.

I also tore down, cleaned out, rebuilt and upgraded my computer storage system to 30 terabytes, reupholstered my office chair, shot some great photos of Gracie and Casey and a few other folks, fixed the neighbor’s dead laptop and Casey’s dead-for-over-a-year laptop too, put up new curtains, got some new kitchen appliances and started making some new recipes with them, put up an additional 90 square feet of shelves in my house, built a Dexter-style plastic containment area to paint a bunch of them, fixed my mom’s touch-lamps that were burned up by lightning, and on and on and on.  I like to keep busy, and I’m still feeling well enough to do exactly that, and more!  :)

Till next time!

Oct 14

4 Month Checkup

10-14-2014 – Today I had my 4 month checkup.  Actually, it started almost 2 weeks ago, on October 2nd, when I got a CT scan.  Today, I got the results of that scan, and a general checkup, starting with the usual LABs blood draw, so that my oncologist could assess those aspects of my health.

The scan looked good, which was great news.  It showed that my spleen is still enlarged, but that’s nothing new.  It’s been enlarged for the past couple of years, since my cancer symptoms went crazy again in 2012.  All the rest of my organs looked pretty good though, and the main thing is that there were no giant glowing spots of cancer concentrations.

The rest of the check up went great.  No swollen lymph nodes, the blood work looked good, and nothing stood out as “bad”.  My oxygen and blood pressure readings were just dandy, and my weight is staying steady.

Overall, my oncologist pronounced me, “still in remission”.

So, it looks like the Ibrutinib is still working its magic, which is awesome.  It does come with some side effects though, all documented with the medicine.

The most pronounced and persistent is a rash that right now is mostly on my right arm, but has moved around and been on the other arm, my back, my chest, even my face once.  It’s not like a chicken pox rash, but more like a dozen or so pimples a few to several inches apart.  They don’t have any pus or anything like that, but they do bleed and scab and itch a bit sometimes.

Another side effect is upper respiratory problems.  A few months ago, I was coughing up big green goobers several times a day.  It started up out of the blue, and ended the same way.  It didn’t even slow me down though, except while I was coughing the junk up.  I had it even while I was going at it building the treehouse for the grandkids.  Now though, I’m just having a lot of shortness of breath.  So much so, that I can barely walk to the kitchen without running out of gas lately.

Of course, it doesn’t help that I have severe COPD, what they used to call Emphysema, from all those years of smoking all those cigarettes.   I quit cold turkey on February 17th, 2012, but that wasn’t nearly soon enough.  If you smoke I REALLY urge you to find a way to quit.  I keep a smoking log to remind me of my progress.  Here it is as I write this:
smokinglog20141014

Anyway, my oncologist suggested that my COPD is pretty severe, with or without the added Ibrutinib side effects, and that I should pursue the issue with my regular doctor, and probably get an inhaler to deal with the times when I’m suddenly really short of breath, so I’ll do that.

Things should get a little easier financially on the medical issues too, now that my MediCare has started as of this month.  Mom said I really need to get a supplemental prescription coverage plan, because the prescriptions are still going to be too much without it, and inhalers in particular are pretty expensive.  So I’ll work on that too.

Next checkup is in another 4 months, and it’ll include a PET scan.

Anyway, things are looking good here, and I’ll leave it at that for now.  I’ll update again when there’s something new to update about.  See ya then!

Jun 14

Another Happy Father’s Day

6-14-2014 – Father’s Day is tomorrow, and I’m happy to be around for it!

Recent medical stuff for me included a PET scan about a week ago, and then a followup with the oncologist a week later to review the results of it and LAB work on my blood.  The short story is that everything went great.  The PET scan was clear and the LAB work showed that I’m just a little anemic, which is pretty much always the case with me.

So, still in remission here, still taking my wonder drug, Imbruvica, every day, and everything’s going swimmingly.

I’ve been having a bit of a mucous problem for the past couple of weeks now, but there’s a lot of that going around and folks are saying that it’s due to all the pollen we’re having this year.  In any case, I’ve been taking Mucinex DM for it and that seems to be holding it in check pretty well.  When it wears off, I’m coughing up big, green goobers, so I take another one, which is a couple times per day.  The oncologist said that if it keeps up I should go see a regular doctor about it.

I’ve lost about 16 pounds lately too, but that’s because I’ve been eating less and exercising more.  With winter over, I’ve been spending a lot of my time outdoors, and because I’m a GREAT dad and grandpa, and because it gives me something to play with, I decided to build my grandkids a tree house/play structure.  That’s what’s been giving me the exercise as I build it, and it’s a lot of fun for me too.

I don’t have the energy or stamina I did pre-cancer + treatments + now the Imbruvica, so it’s been slower going than I’d like, as I take pretty frequent breaks, but like the tortoise in the race, I’ll get there.  It’s been just over 2 weeks on the project so far, and with some work and good weather, I may see completion in another week, or two at the most.

My 4 year old granddaughter Gracie has been helping as much as a 4 year old can, and she’s getting pretty good at hammering in roofing nails and knowing what tools do what and what their names are and stuff like that.  Here she is:

Gracie_The_Builder_2014-06-07-16.45.12My oncologist says that with everything looking good, she doesn’t need to see me for another 4 months.  She also said we don’t really need to do a PET scan every time, so next time we’ll just do a CAT scan instead.  Both were scheduled as follows:

10-2-2014: CT Scan @11:00 AM
10-9-2014: LABS @ 12:30 PM, Oncologist visit at 1:30 PM

Preparation for the CT scan is easy; Just don’t eat or drink anything for 4 hours prior to the scan.

So, that’s about it for now.  For a guy with an incurable cancer going on 13 years so far, I’m looking pretty healthy by medical standards and feeling pretty good!  I’m getting my exercise, having fun and losing some undesired weight in the process.

It’s all thumb’s up around here!

See you next time!!

May 21

Bottoms Up!

5-21-2014 – Yeah, I know it’s been a while since my last update (about 3.5 months), but there really hasn’t been anything new to add.  I take my Imbruvica every day, and keep living life, so it’s been all good.

I do seem to have a few little side effects from the Imbruvica, which I’d discussed with the doctors doing the study before, so they’re no surprise, and not a big deal at all.  It does seem to make me a bit less energetic than I used to be, a bit more tired, but not too much.  And I do get some little pimple-type sores from time to time.  I’ve had them on the back of my neck and shoulders, my face, and now my right arm and the inside of my nose.  Eventually, they run their course and go away.  Meanwhile, they bleed like crazy if I pick at them, so I tend to use a lot of Band-Aids to cover them in order to discourage me from doing that sub-consciously.

Anyway, the big news for today is that yesterday I had my second colonoscopy ever.  I had the first one a year ago today, almost to the day, which I wrote about here: Colonoscopy Day.

The first colonoscopy I got, a year ago, resulted in the removal of a couple of polyps, including a giant golf ball sized growth / tumor / thingy that revealed the return of my cancer, Mantle-Cell Non-Hodgkins Lymphoma.  With remission over so soon after an outrageous bunch of chemo and a stem cell transplant, my oncologist recommended we try a new drug that was still in clinical trials, and got me into the study as a test dummy for it.  I’ve been on it ever since, and recent tests since then show that I’m in remission again, which is very welcome.

I was instructed to get a repeat colonoscopy a year later, and so here we are.

This time, there were no polyps to remove and definitely no golf ball sized tumors signalling the end of my current remission.  Here’s a photo:

Buck_Colonoscopy_2014-05-20-12.08Compare that to the photo from last year, and you can see why I’m pretty happy about it:

Polyp_0116So, that went well, and I seem to be doing just fine here.  As far as I know, I’m still in remission, so I’ve got no complaints about that.

And the doctor who did the colonoscopy said I don’t need another one for 5 years, when I’m 60 years old, so that’s cool too.  :)

My last oncologist quit, resigned, moved her practice, or something like that, so I’m on to the next oncologist, Dr. Connally, and I’m scheduled to see her on 6-2-14 at 1:30 PM, after getting LABS an hour earlier, at 12:30 PM.

Till next time, have fun and try to stay healthy and safe!

Feb 04

Introducing: Imbruvica

2-4-2014 – Well, it’s been just about a month since my last update, so here I am again.

For the past several months, my mom and I have made a trip to Detroit to visit the Karmanos Cancer Center to participate in a Clinical Trial Drug Study of a new drug called Ibrutinib.  Recently, that drug was approved by the FDA and went commercial, to the tune of $10,000.00 per month, according to what I was told by the folks at Karmanos.

Now that the Clinical Trial I was participating in is over, I no longer have a need to go to Karmanos every month to get examined and get another (free) month’s supply of the drug, so this is the first time in quite a long time that we didn’t make that trip from where we live in the cold, COLD, DEEP SNOW of Northern Michigan.  I was glad not to.

There was some question about whether we’d have to make the trip or not however, and I had an appointment with Karmanos for this past Monday, just in case.  We made it last month when we were there, just in case the now-commercialized drug wasn’t available to me yet where I live.  The $10,000.00 per month price tag put a pretty big question about that in my mind, though none of the health care professionals I’d been working with seemed at all concerned or doubtful that it would all work out okay.

They were right.  Everything DID work out okay.  Patient advocates for Johnson and Johnson had me fill out some paperwork that I downloaded from a website and submit it to my local Oncologist, who then passed it along to the financial person in her office for some more filling in the blanks, and a few days later I was approved to get the drug at no cost to me.  It ships directly to me each month via FedEx, and the first shipment arrived on Monday, no fuss, no muss.

Here are some photos of it.  It arrived in this scary looking bag within the bubble-padded FedEx envelope:
Imbruvica-6047Here’s a better look at that bag:
Imbruvica-6049Inside the bag was this box with detailed instructions for how to take it, which didn’t change from the past several months.  The only real change noticeable at this point is the name.  During the Clinical Trials, it was Ibrutinib, which is the actual name of the active ingredient, and now it’s Imbruvica, which is the brand name.  In Parenthesis under the brand name, it still shows the name of the active ingredient as Ibrutinib:

Imbruvica-6050On the side of the box is another scary label in bright yellow:
Imbruvica-6053Inside the box is the actual pill bottle:

Imbruvica-6058And on the side of the bottle, I found it interesting to note that it says, “Active ingredient Made in China”:
Imbruvica-6056I don’t have any problem with that, but it’s interesting to me because China is known for producing and shipping products very inexpensively, and I was told that each of these little bottles of pills goes for $10,000.00, so it’s just kind of amazing to me to think about that.

The only other change that I can see is that the original capsules were gray, and these are white, with a little black printing on the side of them: “ibr 140 mg”

In any case, I was told by the person who phoned me to get details for shipping to me that I’d been approved for a year, and that I’d get a form at the end of the year to fill out for the following year, and so on.  Sounds good to me!

I had to sign when I received them from FedEx, which was expected, as the lady I talked to on the phone about the delivery warned me that I would be the ONLY one who COULD sign to receive them.  Inside the package along with the pills, there was also a form for me to sign and send back in a self-addressed postage prepaid envelope, and instructions to do so within a certain time frame or they wouldn’t send any more of the drug.  I promptly filled it out and went straight to the post office and mailed it in.

Today, I got another couple of forms in the mail from them to fill out and send in the same way, but these are consent and drug allergy notification forms.  No problem, and I’ll have them back out in the mail later today.

I had a visit with my local Oncologist, Dr. Bolmer, about the middle of last week.  I really like talking with her and working with her, so we had a nice visit.  She did the regular exam and then we talked about the Ibrutinib / Imbruvica, health insurance, and that sort of thing, and then she led me down the hall to the financial services person, who took it from there to help me.

The financial services lady needed some sort of documentation on my income, so the next day, I made a stop at the Social Security Administration Office in Petoskey to get a copy of that.  I was pleasantly surprised to find that I’d gotten a $30 per month raise.  I took the document straight to the financial services lady, who made a copy of it for me to take home, and that took care of both our needs to get the information needed to the drug company so they could review for possible approval.

My year of taking Acyclovir after my stem cell transplant is now over.  I took the last of them last night, so there’s two less alarms and pills every day to have to deal with.

I’m still struggling with insurance issues.  Back at the end of November, I went to the ACA’s Health Care Exchange website to sign up for Obamacare, and ran into some difficulty.  It told me that I needed to provide “Official release papers from institution” that I was no longer incarcerated and, “If you do not provide documentation by the following date, your elligibility (sic) for health coverage may end: March 12, 2014”.  The problem is that I don’t have such a document because I’m not now, nor have I been, incarcerated.

Since then, I’ve made several phone calls to the Health Care Exchange and spent literally hours on the phone with very nice people eager to help, who haven’t got a CLUE HOW to ACTUALLY help resolve the problem.  Suggestions they pulled out of their asses have included:

  • Delete your application and do it again from scratch and see if that fixes it.
  • The problem has been escalated, and a “Resolution Specialist” will call you and fix the problem.  (Got told this one twice, but nobody ever called, and nothing got fixed)
  • Go to one of those places that runs background checks on people, pay them to do that on you, then pay to have it notarized and send it in, in place of the document asked for, and see if that works.
  • Go to the police and have them run a background check on you, then have them write up a document that you’re not incarcerated nor should be (not on the run), then take that document and pay someone to notarize it and send it in, in place of the document asked for, and see if that works.
  • Hire a lawyer to draw up a document stating that you’re not incarcerated and then pay someone to notarize it and send it in, in place of the document asked for, and see if that works.

Well, I deleted and redid the application, and got the same result along with the same problem.  When I went to the police, they ran my drivers’ license, then they called the Health Care Exchange and talked to one of the representatives there and explained that I’m certainly not incarcerated and shouldn’t be (not on the run), but that they don’t have a document to fill out that would cover this situation, and don’t just write up documents from scratch like that (probably legal and privacy issues and concerns involved), and basically laughed at the very idea of the whole thing.  They put me on the phone and I answered questions, then they had me put the cops back on the phone, and we did that a couple times.  In the end I was, again, left empty handed.

Finally, I simply gave up.  I called the Health Care Exchange again this morning, got a supervisor on the phone, and explained the situation one last time.  She began to suggest that I write up a document and take it to someone to have it notarized… and I stopped her right there with an EMPHATIC, “NO, NO, NO, NO, NO, NO, NOOOOO!!!!!!!  I’m NOT doing that!  I’m NOT jumping through any more hoops for you people!  I’ve been trying to get this resolved since November, my frustration levels with it all are amped WAY UP, and I’m OVER IT!  SOMEBODY, SOMEWHERE in the US Government has the ability and the authorization to reach into that database and uncheck a box or write in an explanation that makes this all go away.  The US Government obviously HAS the information SOMEWHERE that I am definitely NOT and never HAVE BEEN incarcerated, and they need to pull that information out of wherever it is and FIX THIS.  If that CAN’T happen, then I’m done with this circus entirely, and I want nothing more to do with it!!!!”

With that, she suggested that she could delete the whole thing, and had nothing else to offer.  So I told her to go ahead and delete it.  A moment later, she said she had, and asked if there was anything else she could do for me.  I resisted an evil urge to tell her what I was thinking at that point.

And with that, I washed my hands of it all and walked away from the ACA’s Healthcare.gov website and the Health Care Exchange, at least for now, which was really difficult for me.  Those who know me understand that I’m one of the most politically liberal people you could ever meet, and I’m all for the ACA being a success, and a first step toward a much better health coverage plan known as Single-Payer.  But my experience with it over the past 2+ months was a total let-down, very frustrating, and the sort of story I’d expect to see on a Right-wing website or Fox Propaganda News or something.

I suppose I’ll just have to deal with Medicaid until October, when I’m eligible for Medicare, and then I’ll deal with that.

It’s always the same, from my point of view: Anything at all to do with medical insurance is the biggest money-making scam ever, and a huge pain in my ass, to boot.  When I’m king of the planet, health insurance companies are going to be the first to go, and we’re putting everyone on a Single-Payer system – the end.  Anybody who doesn’t like it can move to Libertarian-Paradise Somalia, and we’ll be happy to provide the transport ships.

So, I guess that’s about all there is for now.  All in all, things are going pretty well for me.  I’m still in remission here as far as anyone can tell, I’m getting my special chemo meds post-Clinical Trials without having to jump through any fiery hoops to pay for them, and I’m feeling pretty good, all in all.

See you next time!!

Jan 08

Slipping Out Of Detroit

1-8-2014 – Hello again, and a Happy New Year to you all!  My last year was great, and I expect the new one will be too!

Mom and I took another drive down to Karmanos Cancer Center in Detroit a couple of days ago, on Monday, for my regularly scheduled appointment.  The roads were clear sailing all the way from home, through Indian River, and on down to about Pontiac, where things started to get bad; Snowy-bad.  The big early January ’14 snow storm that hit the Midwest with record lows and a pile of snow had hit down there, and things were getting pretty messed up by the time we got to the area.

The roads got slick, traffic got slower, people were off on the sides of the road, some stuck in snow or all the way down in ditches, and we saw several accidents.  The closer we got to Detroit, the worse it got, and of course, for every accident, there’s even more slowdown.  One of the accidents was on the other side of the road, and though we couldn’t see it all because of the barrier, we could see that there was a mangled car upside down on top of something else, and there were lots of emergency vehicles at the scene, including fire trucks, ambulances and police.  A lot of people were having a really bad day out there.

As soon as we got off I-75 at our exit, things got even worse.  It looked like there’d been no plowing or salting or sanding or any other measures taken to the streets of Detroit, and they were just horrible for driving, starting, stopping or steering.  It was a lot of deep snow on top of totally frozen solid ice, and the whole thing was a slippery mess.

We made it to Karmanos without any serious incidents, handed the car over to the valet service and went in.  Up to the second floor, as usual, signed in and got my Karmanos tracking badge, had a seat and checked the weather on my tablet, which said it was 4 degrees out, but that it felt like -25 with the humidity and wind chill.  I was wearing joggers under my jeans, plus the rest of my usual winter wear, and things weren’t too bad, though it was cold enough to freeze a witch’s toes when I stopped to fill up the gas tank and felt it stinging my face above where my scarf was wrapped.  I was glad not to be out in it for very long at a time, and felt bad for the few people I saw out there walking to wherever they were going.

Not long after we arrived, someone called me back for the usual routine; Up on the scale to get my weight, then a blood draw of several vials, then off to an exam room to wait for the doctors and staff.

We weren’t in exam room 27 long, when Colleen came in and said she was surprised to see us, considering all the cancellations they’d had that morning because of the winter storm.  She figured that, as far away as we were traveling from, we’d be sure to cancel.  We just laughed about it because we come from the deep-snow areas of Northern Michigan, so we’re a lot more used to dealing with that sort of thing and, besides, the roads were clear sailing for us all the way down to Pontiac, as I mentioned before.

Anyway, the next thing we talked about was Medicaid and how I’ve been cut off from it again for not having met my monthly $1482.00 spend-down for quite some time now, so I have no insurance to help me get the $10,000.00 per month drug I need (Ibrutinib).  Colleen asked about the company(s) that were going to contact me about “helping” me with that, and I let her know that I’m not getting any help at this time with it.  The bottom line is that I’m not going to be able to go down to Karmanos and get it for free anymore, since the study I was in that provided it is over now, and it’s gone commercial.

She went off to see what she could find out about all that, and we went back to waiting.  A little while later, she came back and said that the company she’d mentioned earlier had my information and would contact me again, and that I should contact them, and gave me the number on a sticky note.  She asked me to call her when I got it straightened out with them and on the right path to get the drug.

Another assistant/nurse came in and asked the basic questions about any drugs I’m currently taking, how I’m feeling overall, specific yes/no questions about coughing, appetite, bowel movements, etc., etc., etc.  I let her know that I feel fine and everything’s operating normally.

After that, doctor #1 came in and did the usual exam, checking for swollen lymph nodes (none swollen), listened to heart, lungs, gastric, and so forth, and seemed satisfied with it all.

We talked about the PET Scan results from last time I was there, and he said it was all clear and that I’m in full remission, which is always great news!  I asked about immunization, which we’d stopped when we started the study program, and he said we’d ask Dr. Ramchandren when he came in.  I also asked for clarification about the drug; From what I’d read, it was my impression that I’d take it basically forever, like a person with high blood pressure would take their high blood pressure meds every day forever.  He said that was right, and that the plan is for me to take it for as long as it works for me.

Dr. Ramchandren came in after that, and we had some of the same conversations, and they let me know that I shouldn’t have to come back down to Karmanos anymore, at least not every month, and that I should set an appointment with Dr. Bolmer in Petoskey when I get back home, and start seeing her again instead.  They said to get right on that, because she’ll need to get involved with ordering my special drug, which isn’t some run of the mill thing.  They also had me make one more appointment for 28 days from then at Karmanos, just in case there was some sort of snafu with Dr. Bolmer getting the drug in time, so that I could get it one last time from them, but only if I had to resort to that.  If everything goes well, I’ll simply cancel the appointment at Karmanos.  If it’s not all straight a week to 10 days before the scheduled appointment however, I should call to let them know, so they can prepare by getting the drugs for me.

Also, we could finish the immunizations, and that I’d get the 2nd of 3 sessions with that before I left for the day.

All in all, it was great news!

Colleen came in with another 28 days supply of my special drug, and then I got 5 immunization shots, and we were on our way.

Downstairs we went, headed for the ice and snow of Detroit, and as soon as the valet brought the car around, we were off and running or, more accurately, off and sliding, headed toward my ex-wife Bernita’s house to get some late Christmas presents for our granddaughter, Gracie.  The closer we got to her house, the more horrible the roads seemed to get, and I managed to get stuck on Southfield doing a Michigan U-Turn, with half the car out in traffic, and the other half in the median.  It took me 3 or 4 traffic light cycles to get it on the move again, while all the affected drivers around me patiently dealt with it.

Once we picked up the presents and got on the road again towards the highway, I was starving, so we stopped at the drive through of a White Castle and got 30 cheese sliders and a couple of cokes.  It took so long that the people behind the window thought I was the car behind me and tried to charge me for their order too, and I had to let them know that we still hadn’t gotten ours, and that the line hadn’t moved yet.

In any case, we finally got out of there, made our way to I-94, took it to I-75 and headed North toward home.  The further from Detroit we got, the better the roads got, and after about Pontiac things got a lot better.  Soon, we were clear sailing at full speed up I-75 again on dry pavement.  After Grayling, it started to get a bit dicey with enough powder blowing in gusts that at times we couldn’t see very far ahead at all, and that slowed us down some, but it was only here and there, and after we got off the highway at Indian River, there was no more trouble all the back to my home in Alanson.

So now, I’ll need to see what I can do with the problem with Medicaid, I’m still trying to get straight on the ACA (Obamacare) problem I’ve been having, I need to get with the company  that will “help” with the prescription through all this crappy Insurance scam business we have going on in this country, try to figure out what kind of insurance plan I can get away with using the ACA and the “help” that will be easiest for me to afford, and best to take care of the rest of my health care needs, call Dr. Bolmer and set up an appointment to get her help with filling out the doctor side of the paperwork for the company that will “help”, and probably some other stuff I’m not thinking of right now.

I’ve already called Medicaid and played the “Press 1, Press 2” game for an hour, and got nowhere closer to an actual answer or solution, so I guess I’ll have to get a ride to Petoskey and meet with my worker in person.  Of course, last time I tried that, she wasn’t available, she doesn’t return phone calls, there seems to be no way to actually make an appointment with her, and the folks who work there at the window don’t seem to have any actual answers or information worth spit either.  Personally, I think it’s all a Michigan government conspiracy to keep from paying, or from helping anyone like me figure out how to get them to pay.

I also called the company that will “help”.  First, I got transferred to a wrong number, and after a short talk with them and being told that they have no programs that can “help”, I called the original number back and got transferred again.  Well, they tried to transfer me, several times, and then finally managed to get me through to a lady who told me to go to the web site, download the four page application, have my doctor fill out two pages, fill out the other two pages myself, and submit it.  It will then take a few days for them to process.

So, I downloaded the application, filled out my portion and called Dr. Bolmer’s office to set up an appointment to go see her.  I got a recording telling me to leave my name and number and someone will get back to me, so I’m waiting for that to happen now.

Next, I think I’ll call the ACA back and see if I can get one of the mysterious “Resolution Specialists” to resolve that little snafu that’s been going on for about 2 months at this point.  What do you figure the odds are that they’ll fix me right up this time?  Put it this way, I’m not putting any bets on it, not with their track record so far.

But hey!  I’m in remission!  Woot!  :)
And I shouldn’t have to make those monthly trips to Karmanos anymore!  Woot!  :)
And I’ll go back to seeing a local oncologist again!  Woot!
And I’m sure to straighten out all this insurance hodge-podge, one way or the other, soon!  Woot!  :)

So, no complaints here!  It is indeed a happy new year!

Enjoy this stem cell cartoon I found online!

SnowStemCells

All the best to you and yours, and I’ll update again when there’s new info.

 

Dec 11

Study Time Is Over

12-11-2013 – Had another visit to the Karmanos Cancer Center in Detroit a couple days ago, on Monday, the 9th.  It was a VERY early appointment this time, 9:AM.  I tried to reschedule it for a later time, but they couldn’t work it out, so we were stuck with it.  That meant that we had to leave the house in Northern Michigan about 3:AM to make it there in time, so that’s what we did.

I’d set the alarm on my phone to wake me up at 2:AM, but it didn’t go off for some reason.  Turned out that my phone needed a restart.  Anyway, mom called me from her car when she got here to pick me up, and that’s what woke me up.  So I told her to just come in while I tried to rush so we could take off.

That early in the morning, the snow plows here in Northern Michigan haven’t started working yet, so the roads weren’t in the best shape for driving; Covered in a thick blanket of snow.  The good news is that there wasn’t very much traffic out there except for us.  The highway was hit and miss the whole way, with thick patches of snow in some areas, white-outs of blinding snow in others, and a few clear patches in between.  The few other vehicles on the road were going pretty slow, and they kicked up a lot of blinding snow, so I carefully passed them as quickly as I caught up with them.

By the time we got down to about Gaylord, some plows and salt trucks were out, kicking up a ton of blinding snow clouds behind them and slowing vehicles behind them, which were starting to build up as folks woke up and hit the roads to start their day.  After Grayling, the roads cleared up pretty good, as is usual.  Grayling seems to be the invisible weather line up here.  North of it is the deep and wild stuff, and South of it is the clear roads, if there are any.  So, it was pretty clear sailing past Grayling, and then night slowly gave way to morning light as we headed toward Saginaw.

Everything from there was pretty smooth until we hit the morning traffic around Pontiac, and being their first snow of the year down there, and a Monday, traffic was just about crawling, going 20 to 30 MPH slower than the speed limit on what were, by our standards up North, pretty clear and open roads.  That was kind of frustrating.  And the closer to Detroit we got, the worse it got.  Eventually, we got into the morning commute Detroit traffic jam going 5 to 10 MPH, for about the last 10 miles of the trip.

We got to Karmanos at just a little past 9:AM, handed off the car to the valet service, and headed in.  I checked in and we sat down at a table in the waiting room, and I barely had time to open up my tablet, when my name was called.  I weighed in at 212 lbs (gained some), and then gave 6 vials of blood.  Then we plopped down in exam room 27 to wait for the doctor.

Colleen, our coordinator came by first, and told us that the Ibrutinib Study was now over, as the FDA has now approved the drug.  It will now be commercially available and we’ll soon be able to have it sent directly to my house from the company that makes it.  She needed me to fill out some forms about that stuff and said that they’d have to coordinate with my insurance company to make that all happen.

And that’s when it all hit me in the face again: Medicaid and my spend down.  I explained about the problems I’ve been having with Medicaid and the ginormous spend down I have every month that makes it impossible to deal with costs on my end.  She said the Ibrutinib drug for a month supply like I’ve been getting is $10,000.00 per month.  SAY WHAAAAAATTT????!!!!!

Yeah, so, anyway…  She said the company would work with me and Medicaid and that it would all work out, so I’ll just go with the flow for now and see how it all works out.

Another 15 or 20 minutes went by and the doctor came in, asked if Colleen had gone over the “study is over” info with me, and I said she had.  He said that meant that I wouldn’t have to be going down to Detroit every month to meet with him anymore, though I’d probably have to do it once or twice more before it was all straight, and that was good news.  The fewer trips like this, the better, especially in blizzard conditions.

Then he gave me the regular exam; Checked for swollen lymph nodes, lungs, heart, gastro, organ irregularities in size, sores, etc.  We noted that the thumb damage and blemishes I’d had on my cheeks, back and chest were healed up, and we talked about whether they were caused by the Ibrutinib or some other factors.  We didn’t come to any determination about that, but decided since they healed up it’s all good.

Then Colleen came back in with another month’s supply of Ibrutinib, and I wondered if I could sell them on the black market, now that I know what they cost!  :)  After that, we headed out to the front desk to make an appointment for a month from now, and after a minor tussle over making sure we didn’t have another WAY early appointment like we did this time, we were on our way again.

My next stop was to be a PET Scan over in Children’s hospital next door, scheduled for 12:30 PM, but that whole medical complex is a huge maze, so I asked for an escort to guide me, which is a really nice thing they have going on there at the medical center.  Mom said she’d just wait downstairs in the main lobby of Karmanos, where they have comfy couches and she could just sit and read comfortably.

The escorts came and I followed them through halls and tunnels and a couple of elevator rides and eventually we ended up in the place where they do the PET Scans.  I thanked them, and they were off to assist someone else.  I didn’t sit long in the waiting room there before someone came to collect me, and we went to the patient prep room, where I changed out of my jeans and into pajama bottoms, answered some questions for the technician/nurse/medical assistant, or whatever he is, and then he injected me with the radioactive isotope used in the scanning.

Then I was on my own for about an hour while the radioactive isotope spreads throughout my body so it will be picked up by the scanner.  I played a little Sudoku on my tablet for 5 or 10 minutes, then turned out the light and took a nap for the remainder of my hour.  I woke when the tech came back in to lead me into the PET Scan chamber where the big doughnut shaped machine is.  Up on the table I went, he put the cushion under my knees to prop them up, I raised my arms up and behind my head and into another cushion made to hold them in place comfortably, and just went into rest mode while the table moved up and into the doughnut hole.

It took longer than usual, and I guessed that it’s because they were scanning a LOT of me this time.  Eventually, it was all over, and I changed back into my jeans, got some basic directions from there to the lobby areas downstairs, and was on my way again.  Mom was still sitting on a couch in the lobby, and then I paid the valet fee and they brought the car around, and we were on our way down the road.  She mentioned that she thought she got a little nap there on the couch, and I noted that I’d done the same up in the PET Scan staging area.

I stopped around the corner at a drug store to get a bottle of water, took my Ibrutinib pills for the day, and then we set off up I-75 towards that same Chinese restaurant we’d been to a couple times already, as I had a taste for sushi again (and a bunch of other stuff from the buffet).  A half hour drive later, we sat down and had a dinner there that couldn’t be beat, and mom even tried a teeny-tiny bit of sushi (not enough really to get the flavor, IMHO) and a frog leg for the first time ever.

After that, we hit the highway for the drive North to home again.  I think we got back about 9:PM, so it was a pretty long day.  I dropped off mom at her house and borrowed her car for 2 days to take my 4 year old granddaughter Gracie to school and back for a couple days because my daughter had morning shifts those two days and it was cold and windy enough out to freeze a witches toes off, so we didn’t want her and step-dad Mark to have to walk back and forth in it if they didn’t have to.

The next day, Tuesday, I called the folks at the Affordable Care Act (Obamacare) web site back, since they hadn’t gotten back to me the way they said they would yet.  I was supposed to get a call from a “Resolution Specialist” in 2-5 business days to resolve that snafu I had about wanting proof in the form of release papers that I was no longer incarcerated, when I haven’t BEEN incarcerated (so I don’t have release papers).

The woman I spoke to on the phone was very nice and pleasant and easy to talk with and work with and totally unhelpful, and after 20 minutes of getting essentially nowhere, I told her so, in as pleasant a way as I could, while my aggravation levels climbed.  My bottom line: I WANT ACTUAL resolution, as I was told two weeks ago that I’d get in 2-5 business days with a phone call from a “Resolution Specialist” that never came.

I am NOT interested in trying to delete the information I already put in and try again, when I’ll probably just get the same result.  I am NOT interested in going and buying a background check on myself and sending it in to see if that fixes the problem, when it might not.  I am NOT interested in the fact that I can still see what plans WILL BE available AFTER I resolve the problem I’m having.  ALL I’m interested in is SOMEBODY actually RESOLVING the problem with or for me.  The end.

Besides, it’s THE GOVERNMENT.  They HAVE all the information already about whether or not I’ve been incarcerated and/or released from prison, for crying out loud!  While I was filling out the information online, the web site asked me some very personal questions that I had to answer for it to confirm that I really was me.  I remember thinking at the time how slick that was, that it had that deep level of info on me to be able to confirm like that.  Then I thought, “well, of course they have that level of info – it’s the government and all their records – they know ALL ABOUT me.”

So, for this woman on the phone telling me I need to jump through some kind of hoops to prove to the government that I’m “no longer” incarcerated just really pissed me off, to be honest.  It made no logical sense to me.  They HAVE to already HAVE the information to confirm that, without my help.

With that, I told her that I need to go pick up my granddaughter from school, and I’d appreciate it if she’d escalate it again to one of those mysterious “Resolution Specialist” people, and put a note on it that this is the second time, they were supposed to call me back in 2-5 business days 2 weeks ago and never did, and I want someone to pick up the ball that someone dropped and get the job done this time.  She said she was typing it in as we speak, asked for my phone number and email address, and the call was over.

I’m hoping it will actually get resolved this time, and will update with whatever happens.

Meanwhile, enjoy this photo I shot of my grandkids, Gracie and Michael, with Santa Clause that I took after the Thanksgiving parade about a week and a half ago.  :)

Petoskey_Parade_20131130-5778_2-1_ratio

 

Nov 28

Thumbs Up!

11-27-2013 – So, it turns out I’ve been a bit remiss about a timely update (again).  I actually had my latest visit to Karmanos a little over two weeks ago, and have been meaning to blog an update ever since, but I’m just getting to it tonight.

I’m gonna blame… um… my thumb.  Yeah, that’ll be the excuse this time!  LOL!

Seriously though, my thumb has been messed up, making it difficult to type, so I haven’t been doing nearly as much of that lately.  Here’s what happened…  About two months ago, I was working on a wood project out on the front porch, when I split the tip of my thumbnail.  At that point, I should have gone in the house and used nail clippers and a file to take it down.  But no, I decided to just be a manly man and tear it off in both directions.  In doing so, it tore out a little of the meat on both sides of my thumbnail.  Yeah, it bled, and yeah, it hurt, but I’m a MAN DAMMIT, and I can TAKE IT!!!  LOL!

I knew from previous times I’d done something like that that it would heal up relatively quickly, so I wasn’t terribly concerned about it.  I cleaned it every day with alcohol and peroxide and kept a fresh band-aid on it to keep the dirt out of it, and carried on with life.  A couple weeks after it happened, I went to a regularly scheduled Karmanos visit, then did a blog post on it, the most recent up till now, and thought little more about it.

But it didn’t get better.  It got worse.  A lot worse.  So when I went to my most recent Karmanos visit, I had the doctors look at it, and they said, “yeah, that’s infected.  You definitely need to see a doctor about that!”  They recommended that I see a podiatrist because it appeared to be an ingrown nail caused by the injury I’d done to it in ripping off the split nail and ripping out part of the meat of my thumb with it.  They reasoned that podiatrists deal with ingrown nails all the time, and would be able to handle it.

The rest of the Karmanos visit went pretty much like all the previous ones, so I won’t go into the details.  Drive to Detroit, waiting room, blood draw, patient room, nurse, prelim doctor checkup, head doctor checkup, get another month supply of drugs, drive back home, stopping along the way to eat.  I had a craving for sushi, so we stopped at the same Chinese buffet as the last time.

Anyway, the next day, Tuesday, I called a couple of podiatrists, who said very matter of factly that thumbs are nothing at all like toes, and that they only work on feet and toes.  One of them suggested I try Quick Care instead, so that’s what I did.  I called them up and scheduled an appointment for the next day, Wednesday.

Mom and I took the trip to town and we got to Quick Care a little early.  Even so, they got me in quick and ahead of my scheduled time.  A nurse took some basic information about why I was there, and then the doctor came in, and I showed him this:

Thumb_0177Thumb_0179Thumb_0178Thumb_0180I relayed to him that I’d been cleaning it daily with alcohol and soaking it in peroxide and keeping it bandaged, and he said that I should stop the peroxide and the bandages unless they’re REAL loose.  He said to soak it instead in Epsom Salts solution.  He also prescribed 3 antibiotics in the form of a pill, a capsule and a cream to apply, all three to be done twice per day.  He said to get on that, and then come back in a week to see how it’s working out.

Off I went, got the prescriptions, and started taking them as prescribed, which was to last 10 days.  The capsules are Cephalexin, and every time I open the pill canister they came in, there’s a strong smell of farts, which is a bit disconcerting.  For that reason, I’ve taken to holding my breath when it’s time to open the bottle and take them.  I take two of them twice a day.

So, a week went by, and the situation with my thumb markedly improved by the time I went back to Quick Care for the progress assessment.  The doc agreed, but decided that I really should stay on the antibiotics a bit longer, and renewed the pills and capsules prescriptions, and said to come back in another week for another progress assessment.

So, I got the prescriptions, kept taking the pills, putting on the cream and soaking in Epsom Salt, and it got a lot better.  Not quite all the way healed yet, but almost.  And since I can see for myself that it’s nearly all healed, and the first visit was $95, and the follow up was $85, and the prescriptions so far totaled up to something like $80, and Medicaid won’t pay a dime of it, so it’s all cash out of pocket, and I’m on a fixed income here, I decided to cancel the last appointment, which would have been today.

I also got on the healthcare.gov web site to try to set up a health care plan that’s actually worth a spit, now that I read that the web site is working much better.  Casey called them a week or two ago, and said she had a really pleasant and easy conversation with a very helpful person who took her information and will be sending her a packet of information on the various plans she can sign up to, and that it was all a very positive experience.  She said that the woman on the phone gave her some idea of what she’d have to pay per month to cover her whole family, and it was very reasonable and affordable even on her limited income, which makes sense considering it’s called the AFFORDABLE care act.

So, anyway, I went on the web site, made an account, logged in, answered some basic questions, and it was really easy.  Just as I thought I was about to find out what plans I could actually sign up for, I got stopped though.  I clicked a button to tell me what was up, and a PDF document with a LOT of information popped up, but the gist of it was that they required me to show proof in the form of a release document that I was no longer in prison.

Well, that was pretty confusing, since I’ve never been to prison, so I called a help line, and a very nice woman listened to what I had to say, took some information, and escalated it to a level above her.  She said I’d get a call in between 2 to 5 business days from someone, and they’d be able to help me get through the roadblock and back on the way to affordable health care.

That was yesterday, so I’ll let you all know how it goes when I hear back from them.  So far though, I’m feeling very encouraged about it.  I really need some relief from the costs of all this medical stuff.  I need it to actually BE affordable!

With Medicaid, my spend down amount per month is so high, that it’s just crazy, and basically nothing gets paid for unless I exceed something like $1400 per month in medical expenses.  Then, I owe the $1400, and they pay for whatever is incurred beyond that.  Well, that’s great for the big ticket stuff, like chemo and hospital stays and all that jazz that I occasionally go through, but I still owe the $1400 per month, which I can’t afford, so it’s piling up.  Just do the math: $1400 per month times 12 months is $16,800.  I only bring in $22,440 per year.  My rent alone is $7200 per year, so my budget is already busted, and I haven’t even bought a can of cat food yet!

I budget another $100 in gas to get back and forth each month also, which the folks at Karmanos have forever said I can get reimbursed, but it’s never happened, and we’ve filled out all the paperwork multiple times and talked till we’re blue in the face on the phone, and it’s just a bunch of BS.

But at least most of it just gets billed and ends up in the hands of collection agencies, who’ll take any amount I send them, and damn the fact that the debt itself just continues to climb and that there’s no way I’ll ever be able to pay it off.  But for day to day med stuff like this thumb business, I’m just screwed because I have no choice but to open up my wallet to get it done.

Anyway, I’m really looking forward to a truly AFFORDABLE health care plan that actually covers my medical expenses in a reasonable way, and I’ll gladly pay an AFFORDABLE amount every month to have it.

So there ya go.  This month’s update!  Thumbs up, folks!  It WILL get better!

I’ll be back with another update when I hear back from the folks at healthcare.gov on how to get out of the health care prison I’m in!!  :)

Oh yes, and a happy Thanksgiving (tomorrow) to you all!

 

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