Category: daily update

Macro photos of lesions

Here are some gorgeous macro photos of the lesions that KM took w/ his Canon D5 and a macro lens.  I needed to send them to my naturopath so he could evaluate what to do about them.  His solution: Thuja orally, and vinegar on the lesions.  I haven’t been able to locate the Thuja yet, but the vinegar seems to help.  My eyes are worse, though.  Skin falling off, and open raw skin at the folds.

lesions01

lesions02

lesions03

lesions04

lesions05

lesions06

lesions07

lesions08

lesions09

lesions10

lesions11

New Neti

I left my Neti at O’s Aunt’s house in the East Bay.  So I got a new one.  The kind they had at Rite-Aid was a little… funny looking.  At first I was a little unsure about putting a miniature penis up my nose. BUT, it actually works a lot better than my old one.

Neti Penis

EPIC Craigslist FAIL

So I posted that message to Craigslist, trying to find a home for the extra IFN in my injection pens.  I had he best of intentions, but boy was I not thinking.  Here are a couple of the 10 responses:

From Laurence:

Hi,  Your heart is in the right place,  but the infection risk of someone else using your partially used pens is HUGE!!!!!!  Please take the ad down ASAP before some less informed actually takes you up on your generous offer.  I would hate to flag you,  no medications to be listed as per craigslist rules, I will trust you to do the right thing.  I work in healthcare and an fully aware of the cost of this stuff.  Please don’t put someone else at risk.  Great idea,  but there has to be another way to help folks.  Lobbying in albany or DC or contact local politicians to force Govt to  further subsidize these meds would be a great start.  Best of luck to you.  Happy thanksgiving!

From Gerthvan

I don’t need the interferon, but I think you are terrific.  Have you asked your doctor if there is a patient that might could benefit?  All the best to you!  Happy Healing and Happy Thanksgiving.  You are a good soul.

From Gigzilla

Hello,
I admire your generosity, but if this stuff is in a syringe (self injection pen??)  it would not be wise for more than one person to use it. If I am mistaken please forgive me. I am sure you mean well.       G-47

From Anthony

Very, very nice and thoughtful.
Hope you get better and Happy Thanksgiving.
Anthony

So of course the Hep-C patients would be well versed in the nuances of sharing needles, sterility of needles, etc.  And me, the silly Melanoma patient is clueless.

I freaked out when I realized this.  I had a total pins and needles attack. So fucked up the thought that my attempt to help someone could make them worse.  Fuck, what a mind trip.

Back when I found out I would be injecting my dear friend KM was all excited to teach me how to hit a vein (no he’s not a nurse, no he doesn’t hit veins anymore) but was dissapointed when he found out that all I had to do was jab it in and press the plunger.  The things that IV drug users know that come in handy.

A new day, a new side effect

So every few days my side effects change. For a while it was aches and pains, then we seemed to get that under control. Then it was the pins and needles, which are still my number one most awful side effect (bad episodes each of the last three days). But I have it more under control. For a while I couldn’t eat because of the lesions on my tongue, and for two days I even had trouble talking it was so bad. Then it was the lesions on my hands, which are easing off (i put vinegar on them). And the “sore bottom” which I soak as often as i can.

The latest are my eyes. The skin around my eyes is simply falling off. Flaking off in painful chunks. I have cuts/lesions at the creases and folds below my eyes. And crazy white flaky skin. It hurts, and putting moisturizer on it seems to make it hurt more (temporarily) and not really solve the problem. But if any of this is a pattern to be repeated, the eyes will be better by next week, and it will be something new.

I just posted this to Craigslist

We will see if it gets taken down.  I think it violates the Terms of Service.

Interferon – Intron A

I am 14 weeks into a 48 week Interferon (Intron A) regimen for Stage III Melanoma Cancer.  I get a monthly supply of IFN in 4 self injection needle pens. My dosage is 20 MIU, there are approximately 75 MIU per pen, which leaves approximately 13-15 MIU in each pen after I am done with it.

This stuff costs a bloody fortune, but my insurance covers it. Each of those pens w/ the 13-15 MIU is probably “worth” $500.  And I have 14 of them right now, and a new one every week.  So that’s $7500 of IFN.

Obviously, it is not enough for a full course for a Melanoma patient (10 MIU/m^2), but would work fine for a hepatitis c patient, or a MS patient (3 MIU/m^2).  Though to be honest, I’m not sure what the differences are in the brands/variants of Interferon Alpha.

I am hoping to find an IFN requiring patient who does not have the good fortune of having health insurance.  I don’t want payment.  I just want these insanely expensive drugs to help save someone’s life.