Tuesday, May 27, 2008

Mixed news

The really really great news: My lymph node was clean. My oncologist chased me down the sidewalk to tell me, after I left the appointment.

Not that great news: The thickness of my tumor changed my odds. Right now, I have a 50/50 chance of recurrence. With time, that goes down. He re-staged me at 2C, rather than 2B, because the initial biopsy showed ulceration. (I think that relates to growth rate.) And as clean as I look, I may not actually be; a PET can miss half a billion cells, apparently. (Stage 3=lymph involvement, which I mercifully don't have.)

He says, "Melanoma does what it wants to." I could have something in me, or I could not. A recurrence could be on my skin, or it could be a metastasis from this one. Order of likely places to metastasize: lungs, liver, bones, brain. A skin recurrence could be relatively non-aggressive, like what I just got rid of, or it could do much more frightening damage.

He brought this home, when he handed me an actuarial table of survival, by stages and years, and showed me where he thought I might be. In a gentle, compassionate way, of course--but the information was there, and is right now in my backpack.

I feel clean. But I don't know that I am. The parameters of the study weren't what I'd posted, which was what my oncologist told me. He was as surprised as I, when I told him what was in the folder he'd given me. I would either do treatment for a month and be done, or simply be closely observed. That's not enough to make me feel safe.

Studies disagree about the effectiveness of interferon, anyway: anywhere between ineffective to 20% reduction in recurrence. But this is the option.

With all this in mind, we're doing the standard treatment rather than the trial. One month of IV interferon, 5 days/week. Weekly self-injections for the next 11 months. I'll be really ill, and then just kind of flu-like. Of course this may change what I'm able to do in the fall, and through the next year.

When will I be done with this? Standard rule for most cancers, including this one: if I can stay clean for 5 years, I'm 95-98% safe.

Feeling: both happy about the lymph node, and scared about statistics. I'm not afraid of interferon flu. I want my body to fight this, and I think it already has been. I'm also aware that the only real resource I have is spiritual. I asked if there was anything I could or should be doing, besides interferon and sunblock. He answered, "No. Try not to worry."

You are my support team, and I still need you.

I know this is a lot of information. I haven't assimilated it, yet. Writing helps me do that, and it also helps me figure out what questions I still need to ask him. I'm not sure what's truly important, and what's just scary. This is what I gleaned from an hour-long conversation. I've already sent him an e-mail, asking if the clear lymph node changes anything. [Update: it doesn't. He had presumed that I would have a clear lymph node. My risk of recurrence/metastasis is still in the 50% range.]

I'll be out of the dorm in the next week or so, and staying with a friend in Stockton. I'll have another oncologist there, so I won't need to drive between there and Oakland. I'll start treatments probably the first week of June.

Thank you all so much, for your prayers and for everything else. Keep at it. I'm not so primally afraid--but I know how serious this is.


quakerdave said...

Here c/o Fran.

Holding you in the Light. Love the blog.

dave said...

You're in our prayers for sure. Dave and CJ

Debbie of Boise said...

Wow, what a reality sandwich to bit into today. I hold you in my heart and before God. If you need *anything*, you know how to get a hold of me. God be with you.

Kirstin said...

Thank you all, and yes Debbie, I do.


Anonymous said...


Take a blog jog over to Elizabeth Kaeton's 'Telling Secrets', and scroll down to her blog list and check out 'Emmy's Delusional Hope'.
the piece in question is entitled " Worry about Tomorrow".

I think this was written just for you. Hope it helps.


Andrea said...

Continuing to hold you in prayer, Kirstin. You're the bravest and most glorious lily I see in God's great field.


FranIAm said...

Sending so many ongoing prayers your way Kirstin.

susan s. said...

Me too!

johnieb said...

Godde loves you, Dear Kristin, and so do we; and, to be brutally blunt, that's all any of us have, or require at any time.

May your paths be clear, your ways to Godde straight and smooth to Her welcoming embrace; may you never lack Her love.

Hang on, Baby; keep on lookin' good, and doin' right, and let the rest worry about itself; we're all gonna be together at last, no matter what.

Caminante said...

Lots of prayers... reading your words takes me back six years ago to walking this path with a dear, dear friend who was stage IV melanoma but with no lymph node involvement. Six years later AFAIK he is still clean... using whatever that banana sunblock is (it doesn't run like others), wearing long-sleeve shirts and doing the whole bit to stay out of the sun.

Regardless, each person is unique and so my prayers are for you that the treatment works and that you do not suffer horribly in the process.

How is your ear healing?

Kirstin said...

I'm out of words.

Hugs for everyone.

Ann said...

Prayers continuing.

eileen said...


Still praying..still holding you in love and light.

BooCat said...

Kirstin, Prays are continuing for you as I pray the Daily Office. Since I sometimes have trouble sleeping, you have also had Rosaries offered up for you in the odd hours of the night.

Mimi said...

The steps backwards are part of our journey, but sigh. Hugs and love and of course BIG prayers always!

MikeF said...

Haven't stopped praying here - not going to stop, either!

Every possible blessing...


Kirstin said...

Thank you, all.