straight talk from the dr – and its good

departure for portland is creeping up fast! i’m going to portland at the end of the month and staying through mid august. after friday, i only have six more weeks of injections. my drs are all v positive. they seem really genuinely happy when my scans come back negative – as if they really thought there could be something on them. my oncologist doesn’t want to talk numbers, and always gives me the crazy ranges like 5 to 35 percent. i asked my derm to give it to me in plain language, and pull no punches, and he basically said that if i was going to relapse, it would have already happened. he says that he has two kinds of melanoma patients: the 60 year olds, who usually relapse w’in the first year, and the 30 year olds, who all survive w/o relapsing.

He told me the story of a guy who came in 5 years earlier w/ a massive melanoma on the back of his head — so close to his major lymph nodes. Apparently it had been bleeding for 6 months, and he finally came in to the dr. It was advanced stage III – in lots of lymph nodes. He had surgery and did the interferon, and 5 years later, is perfectly fine.

Infections and Fevers

I have this *nasty* infected bug bite on my ankle: i couldn’t walk on friday, so I had to have an emergency trip to dr to get it looked at & get antibiotics. Spent the weekend in bed. Finally walking by Monday night.

Nobody told me not to do my regular injection, which I delayed from Sunday to Monday. (and I did go to the dermatologist Monday, even though i slept through that appointment and arrived an hour late — at 3:30PM!). Apparently the two drugs *do not* like each other. Or maybe my immune system is just that fucked.

I spent the night with a blistering fever, yet shaking with cold tremors. O said she almost threw me in the shower I was so hot (and kept asking for more blankets.) It was the kind of shaking tremor that you just can’t control. It sucked. I couldn’t sleep. Was up for good at 530, but couldn’t really move. Just sitting on the couch trying to meditate some of it away. then at 10am, I fell asleep, and slept all day. today I got up, and felt a good deal better, but still not great. And it has taken me 48 hrs to write this, b/c i keep getting nauseous looking at the screen.

On top of all of that, I left my syringe out – it has to stay refrigerated. I only noticed it late the next day. Two injections worth down the drain, er… sharps container. That’s about $1500 worth of drugs. Good think my co-pay is only $25 for a four pack… It is the only time my insurance has really stood out. That and major surgeries. Everything else they screw me on.

photo-59

The other good thing is that because I had to do one week of half dose after I got sick (a good six or eight months ago), I have enough extra that I will be able to do all of my injections. I won’t run out.

I have an infected ankle (but it is getting better)

I had a bug bite, or something, that seemed like it was getting worse. Two days ago, I had some pain walking in the morning, and I tried to lance it that evening, but only got some watery blood… no puss.

I lanced myself, but only got blood

And yesterday morning I woke up just after 8am from a dream in which I broke my ankle. And my ankle was throbbing in pain. I felt absolutely terrible. I got up to go to the bathroom and take some tylenol/advil and i could barely walk. really. i couldn’t put any weight on the bad ankle. I was a mess. When 9am hit, O called my dermatologist for me (I have an appointment on monday anyway…) and they told me my dr wasn’t in, but to just come in and one of the doctors would see me. We ended up taking a car in for an inspection.

When I got there, the doctor looked at O and me and joked “You two sure look like you’ve had a rough night.” Later, when she realized I was on IFN, and had been for a year, she apologized profusely. I told her its good to get a reality check sometimes…

She pushed on the welt/bite, and decided that there was no pustule (which I think I had already proven the night before.) Put some topical antibiotic on it. And gave me a prescription for antibiotics. I spent all of yesterday and most of today in bed with my foot elevated. I’m just now starting to feel a little bit better. I can walk around a bit without intense pain.

getting better

I think it got so bad overnight because I injected that night. That injection caused my immune system to temporarily dip even further below its already immunosuppressed state.

Lying in bed for the last two days is all too familiar. Last spring I spent 6 weeks lying in bed while recovering from my surgeries. It was a little offputting to realize I was back in the same place. Thought I knew it was only temporary.

Likewise, me telling the dermatologist that I had been on IFN for a year made me realize that, in fact, I started my interferon June 16, so in ten days, I actually will have been on the drug for a year.

New Melanoma Drug

This is for patients in a *much* more advanced stage than myself. But is good news in general. From the BBC:

PLX4032 works by seeking out and destroying tumour cells carrying the BRAF mutation implicated in 60% malignant melanomas.

This could not only help to shrink the skin cancer, but also delay its spread.

Currently, only a small proportion of people – less than 5% – live more than two years if their cancer has spread around the body.

Early findings

In a phase I study involving 16 patients with BRAF-positive melanoma, over half saw the extent of their cancer reduce by at least 30%.

Patients treated with PLX4032 lived for a median of six months without their disease getting worse and more than half experienced significant shrinkage of their tumours.

This included patients where the cancer had spread to the liver, lung and bone.

an update

almost down to 8 weeks.

i’m falling apart, but the end is so totally in sight. then i will come back together

my mouth is so raw that i can’t eat much of anything. even sucking on the straw of a smoothie hurts my tongue from the pressure. i’ve def lost a lot of weight. there is some symmetry, as i started the whole thing lying in bed eating trail mix and put on 15, so it makes sense that i would end the cycle dropping those 15 off.

i had to buy some fat pants this winter. size 35 and 36. right before i got sick i bough a whole new set of pants that were 31 and 32 (and still have their tags on them), as I had just shrunk enough that my regular 33-34s were falling off me. So i just tried on my 33s and 34s, and they are kinda baggy. but the 32s are still just a little too tight. a month ago, i couldn’t button the 32s – the gap was like a full inch from button to eyelet. now they button, but tightly. a little bit too much panty line from behind (LOL)

i’ve been riding my bike a bit. and O just formally moved in this month. she got a tenure track job, which is a *major* deal considering it is only 1hr outside of NYC, and the market this year was horrendous. Half the searches were canceled b/c of the Great Recession.

i’m taking 4 months off from the studio. and i’ll tack those four months on Oct-Jan. i need to rest

i’m going to portland july1-aug15 to do my last month of treatment, and then recouperate for a few weeks. last day of injections is july 23rd.

Jumping ahead

I got confused yesterday and injected a day early. I’m not sure if my confusion led to preinjection nausea symptoms, or if I was just feeling bad in the same way I do in the hours leading up to an injection. Either way my body knew/tricked itself into thinking that the way out of the nausea was injection. It is both logical and alarming at the same time. It is crazy how much my body has adjusted to this nasty regimen. AKA “this nasty habit”