Thursday, November 06, 2014

All in Vein

So this was how I spent the majority of my birthday:

That's my chemo birthday grimace!
Well, I wasn't hooked up to the IV the whole time, but I was in the cancer center for most of the day.  I was in the consult room for HOURS!  This doctor in.  That doctor out.  This question.  That question.  Maybe an answer, but I'll check on that.  Oh, look!  Here's a new nurse!  Oops!  She's gone!  Don't forget to fill out the survey about your bowel movements!

That is not a comfy spot for an IV.
And then of course, there was ther LOOOOOOOOONG stretches of just sitting and waiting.  Here's a recap:

1.  I have Stage 4 melanoma, which is the highest stage.  After this, I get my diploma and graduate.  I don't remember taking the first three levels, but it must have been all those frat parties.  This is because I now have melanoma that has metastasized in a "distant organ."  I love that phrase.  It makes it sound like my spleen is miles away from the spot on my neck where this all started.  As if I needed anything else to make me sound fat.

2.  They still think that they can cure this thing.  I guess we'll see about that.

3.  They really want to get me into the follow up drug treatment to the one I am taking now, as that is the hotshot new treatment that everyone is doing and I want to be one of the cool kids.  I missed out on the whole twerking thing, so I want to catch this fad while I can.  Per FDA regs, you can only get the new treatment after you take the one I'm on now.

4.  They want to upgrade me to a clinical trial that uses the drug I am on now, plus a series of shots of another drug--kind of like what I did before, except that it's like three weeks worth of daily shots each treatment cycle that I would most likely do at home.  Blam!  Right in the belly.  At least it's a target I could not possibly miss.  It all hinges on insurance approval for me joining the trial, which is supposed boost the efficacy of the drug I am already on.

5.  There is a spot on my liver that needs to be checked out, so I have a PET scan today.  Chiquito really hates those things, but I keep explaining to him that it's a pet scan, so he has to be there.  He wants a second opinion on that one.

6.  Just for shits and giggles, I'm having an MRI early Saturday morning.  I don't know exactly why they're sending me to this one, but the brain is a place this crap can spread, so they're probably just checking things out.  I did not know that I was going to have this one until I was sitting with the scheduler.  They're probably just going to find that my skull is full of old comic books and pop tarts.

This is my "I'm relieved all the poking is over" face.
After all of that, I finally headed down to the clinic for the actual infusion, where three nurses poked me four times to find a vein.  I am getting ready to kick and scream for a port.  I've had quite enough of this stuff, especially if I am looking at treatments into the spring, which it seems I am.  Thankfully, it was the three best nurses in the place.  There are more than a couple there who are nice enough to be sure, but who just aren't good with the difficult sticks.  One of them is a digger who just can't let go of the idea that she can get that vein if she just....twists....the needle....the right way.  She was headed out when we got there, which made me happy.

The infusion itself was pretty quick.  There were no pre-meds, so the whole deal took about 90 minutes after the drug got there.  I didn't have a problem with burning, but I got this weird pressing sensation in my arm, like someone was pushing down on it.

So far, I feel fine, just a little bit draggier than normal.  The first session is usually the easiest.  If get to shoot myself in the belly, then that will amp up the side effects considerably.  Every time I go to the bathroom now, Keith asks me if I have diarrhea.  They played up the diarrhea as a side effect to watch for.

Honestly, at this point, I don't know how I feel about any of this, besides pissed that I am doing it again.  I'm finding it hard to put a lot of trust in these drugs.  They all keep carrying on about how astonishing the success/survival rates are, almost 20%!  Wow!  I know that's a big improvement over, say, 0%, but everybody keeps saying that to me like it's some magical, mystery number that means I get to be one of the elect automatically.  All I keep thinking is:  "What about the other 80%?"  That is a much bigger number after all.

Bring that up and you get told to "focus on the bright side"  and not to "give up hope" and "keep fighting" and so on.  I feel like I am being asked to totally ignore the dark side of this equation like it does not exist.  I can't do that, especially if my organs are hosting little melanoma franchises.  The numbers last time were much more in my favor, yet here I am back in this pickle again.  Twenty percent is a long shot and I would be dishonest with myself if I didn't admit that.

It's a long shot I am willing to take, however.  As long as I am able physically and fiscally, I'll take every shot and chance I can get as many times as I can get them.  I'm in this deal for the long haul, wherever it heads.  I just want people to stop asking me to only acknowledge one of the possible destinations.  How am I supposed to avoid it, if I have to pretend it's not there?

More as it develops.   


Pat said...

1. You are the best writer, even when writing about something as sucky as cancer
2. Get the damn port. Tell your onc. that you're stopping treatment unless they give you one. You'll be amazed how fast they can schedule the surgery. Ask me how I know. And I had treatment in my brand new port the day after I got it.
3. This is about as eloquent a discussion of what I called "the black hole" as I have ever seen. I don't think anybody who hasn't been facing a serious and deadly diagnosis gets this. I was well past my treatment before I ever got to the point where my death was not the first thought I woke to every morning. Sometimes carrying everyone else's good wishes feels like another burden. I wish you peace and the best possible results on your additional tests & getting into clinical trial.

Skunkie said...

I wholeheartedly agree with the previous commentors first point. To have some sense of humor about the situation has got to add a couple of percentage points to the success rate. But I agree, trying to ignore all the potentials to me would be more stressful than at least acknowledging but not wallowing in them.

I'm thinking about you dear, and wish for the best possible outcome.

Sheryl said...

Getting a port and avoiding the vein miners with their pick axe needles is a must. You deserve to be as comfortable as possible. You are in my thoughts.

Linda @ A La Carte said...

You are a brave, strong and funny man my friend! I agree that all destinations need to be thought about. I'm on your team!

Joy@aVintageGreen said...

Hi Eddie, you laid it all out very clearly. Port if at all possible. Use you good times and rest when you should, eat, get enough liquid. Team Eddie.

Shara said...

Your sense of humor gets me every time. Even on post such as this one. I don't know what to say except we are all here for you and we are sending out all the positive thoughts and vibes and prayer that we can possibly muster up. I also want to add f*ck cancer.


Judy said...

Team Eddie! I'm keeping you in my thoughts... and pray for the best possible outcome. Don't let them torture you... demand a port.

Unknown said...

Dangit Eddie, I'm pissed that you had to spend your birthday that way! Not mad at YOU, of course, but just mad at the situation. Suck. Suckity sucky suck! I appreciate the fact that you can keep a sense of humor in the face of all of this, all over again. Eddie, I'm sending good vibes from Denver. I really and truly wish you peace of mind and heart.

We are: Clamco said...

Did the nurses sing Happy Birthday to you? And did you ever make it to Zen Garden for your special dinner? I hope so on both counts. If not, go out this weekend and spoil yourself silly.

Lynn said...

That wasn't a good way to spend your birthday, but hey if it's your first step to being here for another one, I'm all for it. Kick this cancer to the curb! said...

I just read over ar Clamco of your cancer. That really sucks. I'm in a partial remission with myeloma. Everyone thinks it's melanoma ... Ha! Quite different cancers. I just want to say hang in there. There's lots of drugs in the pipeline that are doing amazing things. And clinical trials. It's hard for others to get how it is when your life revolves around infusions,pet scans,MRI s and doctor visits. It's like there is no normal. Well, except the new normal of waiting in chemo rooms. Keep laughing and hang in there. Best to you!

Nancy said...

I second everything that Pat said. I loved (insert sarcasm) the people/family who told me I had to have a positive attitude to beat it. You've earned the right to feel how you feel.

Kimberly Hutmacher said...

I just found your blog through Lorraine over at Clamco. I wish I had found it sooner. You are an excellent writer! I'm so sorry to hear about what you're going through. I wish I could do more, but I will pray for you- for peace, strength and healing. For your insurance company to cooperate with your doctors and what they feel is the best course of treatment. For the strength, wisdom, guidance, and skill of all those caring for you.

rush said...

Hang in there. It will be over when it's over, and not until you say so. I haven't been following, because there wasn't a way to get email notices, so when "clamco" mentioned that you needed a little love, I came a-runnin'. (BTW, I sent you a notice about the email notification thing, and you must have been busy. No problemo, though, I'll work around it somehow. Now that I'm here, I know that I have missed your words and ornery spirit.) During one of my MRIs, I fell asleep. Maybe you will, too. Oh, and happy birthday! So, for now, this big ol' L-word from NC is waving wildly and wishing you the best.

Donna Wilkes said...

I have never experienced anything this serious, Eddie, so I will not write any platitudes. I do love the way you have expressed your thoughts and feelings in such a simple, stark way. If we are picking team, then I pick Team Eddie.

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