Saturday, June 05, 2010

Optimistic update

I was too tired to fill people in last night. My oncologist here (whom A and I call "Dr. GoodGuy" to distinguish him from his colleague Dr. Evil who endangered me) examined me, listened to how I said I was feeling ("hmmm, I'm so vague about my body right now, but I don't think I feel sick"), asked me if the surgeon got it all. He said he thought it would turn out to be just this one site. Ordered a PET to make sure. (I'll call radiology and schedule that Monday, if they don't call me first.) Ordered a blood test. Gave me a scrip for Xanax. Referred me to an oncologist in Sac whom he trusts, both for second opinion/more information and for follow-up care. (Dr. GoodGuy is going on vacation from the 8th until July. His department consists of three doctors--him, Dr. Evil, and one other whom I don't know.) Made a follow-up appointment (or suggested I do that? I don't remember) with himself six weeks from now, in case I still want to discuss things with him or if I need treatment that makes more sense to do here. Told me that if it turns out to have been just this one site, my choices are to do nothing (NOT happening) or to join a clinical trial--and there are lots of those.

He takes for ever, but he listens. And he had no problem going back and explaining something I didn't understand, including how he didn't understand it either. Random bits of what I may be misunderstanding/misremembering: Metastasis in one site is stage IV but acts like stage I. It's way better to have it in one site than in more of them. If we've gotten it, we don't have to do anything right now but there are trials to join if I want to. (Again, I want to.) This could be from my tumor two years ago (bad) or a new mutation (less bad). There's a test to find out. Results of that test don't really make a difference in treatment, if it's only the one site. I can ask all my questions again to Dr. Sacramento, because I'm only understanding in bits.

Basically, if we've gotten it that's really good news, and I can go back to my life.

I won't do normal chemotherapy now; I'll sign up for whichever trial is appropriate. At this stage if there are multiple sites, there is one chemotherapy they use. It's miserable and the results are mostly palliative. There is an immunotherapy that works wonders, Interleukin-2--if you're in the small percentage of people whom it works for. (The interferon I took for a year was also an immunotherapy. I called it chemo because my friends were familiar with that term: something you put into your body that fights cancer and also makes you miserable.) A friend whom I think is an oncology nurse (she works for a hospital system in Sac) sent me a link to this newsletter. I listened to the podcast detailing melanoma treatment strategies. Apparently according to those doctors, the standard of care is a clinical trial. That's where we're at with treatments we can stand on--there aren't any.

Where am I? Guardedly hopeful. The blood test came back normal, which is a really good sign. My consultation in Sac is scheduled for Monday the 14th. I'll have my PET before then, with enough time so that Dr. Sacramento will have the results. I'm kind of waiting to breathe until that's clean.

I got really dire news on Wednesday: a path report came back "consistent with metastatic melanoma." I went immediately into warrior mode: fight for your life; all you know is that everything matters. And then yesterday, a reprieve. A. hadn't really eaten for two days. She was so relieved that she got hungry while Dr. GoodGuy was still talking. I told her, I think I'm more guarded because it's my body. My body clearly makes this crap. We caught this one. There will likely be others in my lifetime. I'm going to always have to make sure I have health insurance. I'm going to always have to be vigilant. But I can stop thinking of life in five-year blocks now; the chances just got higher that I'll be alive at the end of this one.

This is going to sound really weird. I don't want to have metastatic cancer floating around in me, obviously. And no rational soul wants to need chemotherapy. But I almost do want something to show up in my PET--because I want to see my body cooperate with the tools they'd give me to kill it. I feel like, well crap, interferon didn't work. I want to see with my own eyes that something does.

I need to do some physical activity that honors my body. A. and I were talking about Tai Chi. Neither of us knows anything about it. But yoga never stuck with me, and I want to do something just to get rid of the mentality that my body lets these tumors in.

Get back to my life. What does that really mean? It means, do the things I love. Keep the worry about cancer only in the back of my mind: maybe as a simple reminder that life counts, but don't obsess over it. It means, I had a recurrence of the thing that might ultimately, on some unknown date in the future, kill me. Live like I know I've only got now, because that is the truth. I could be blindsided by tumors at any point in time.

It also means, fix the things I think I'm doing wrong. Throw myself in where I've only gotten my toes wet. Face the things in my everyday that scare me--things like finding a way to make a living doing homeless chaplaincy. Organize my time so that I get the projects I want to do, done. I don't know why that is harder, but it is. Maybe that will be easier now, because I've had this reminder that only now exists.

I'm falling back to sleep. I must have come to peace with something.


Kat said...

Thank you for explaining all that -- the details are helpful for prayer, hearing your thoughts is good on a totally different level. Get good rest and keep the updates coming. ((hugs))


Debbie of Boise said...

Dr. GoodGuy is a saint. God bless him and his ministry. I am *so* glad he ended up on your health care. Your dear friend A. is part of that team too and God bless her *real* good.

I highly, highly recommend Tai Chi. I practice the short form Yang from 5 - 7 days a week. I know a really good teacher in Boise. :-)

A quick google has a number of Tai Chi instructors. Focus on those that also teach Qigong. Qigong is a healing art using principles of working with Chi (your body's life energy) like Tai Chi does. The instructors that teach Qigong and Tai Chi will teach Tai Chi as a health practice. Tai Chi is also a martial art when practiced at a faster speed. There are those who study Tai Chi for self defense.

Blessings on your journey. So glad to read the good news.

Sierracanon said...

Gay Ann White, who is a member of the Celebration Choir, is a Tai Chi instructor. You should talk to her.

Kirstin said...


David, Mary just e-mailed me the same suggestion! I will.

Mimi said...

Thank you for typing this all out, and interesting.
I'm glad you have Dr. Good Guy! Mwah

Two Auntees said...

You are in a difficult place right now. A place of knowing something is wrong and not having all the details of what you will be dealing with. The not knowing is always the most difficult part for me. I pray for peace for you during this time. I pray that your body will heal. Know that many people are sending you love and in prayer for you.

Grandmère Mimi said...

Kirstin, I'm pleased at the positive news. My prayers for you continue.

Love and blessings.

Anonymous said...

I've never left a comment on a blog before, but this sure warrants it! So, Kirstin, even though we rarely see you anymore since we go to St. A's only one Sunday a month to lead our support group, and you are never there that Sunday (anytime?); please know that we do remember you in our prayers and wish the very best for you and admire the courage you show in your writings. Keep it up. We send you our love, Mary Beth & Mary Lee

eileen said...

Good news...thanks for the update - and it seems that you are putting this trial to good use - getting things in order, and doing what can be done. Blessing K!

it's margaret said...


"get rid of the mentality that...."

I think your mind is doing just fine sister. Don't change a thing.

Love to you. And peace. Praying furiously.

Ann said...

High dose interleukin-2 is used for melanoma and for kidney cancer, which are similar. Here's the maker's website:
The treatment is reputed to be taxing in the extreme, but if you have it done where they do a lot of it, manageable. The skill of the nursing staff is key.

Caminante said...


prayers continue

Kate Murphy said...

Was so good to see you F2F at Cathedral today! Was hoping to talk back on 5/21 at CDSP but Angela fell as we were heading to hug Dan and we were off for x-rays and splint for her fractured finger.

Got home tonight after our third Eucharist of the day and found your post. Yes, much better news even if you need to be guarded.

May the angels keep your foot from striking a stone.



Göran Koch-Swahne said...

Thank you for this positive and helpful post. Hope is good. I know you will fight! Prayers continuing! Take care!

Sarah in deepest, darkest Lomellina said...

Sees "acts like stage 1".


I don't think I have enough extremities to cross on my own. Am going to borrow some from Son of Thor and the Italian Sock Dropper.

I want you to be well, healthy and happy so as a family we are pushing that kind of thinking at the universe.

Which is nowhere near as hippy as it sounds, considering the rude words I've been using in the last couple of days in my conversations with fate and destiny.

Big fat hug sweetie, with hope, love and a big dash of being heartily pissed off and scared on your behalf.

Right, off to cause a second candle crisis at the Santuario. I'm not up on which saint is responsible so I'm going for the "make them all a fire hazzard" approach.

Wormwood's Doxy said...

I'm so glad you got some good news. Prayers ascending...

Fran said...

I am so glad to read this and continue to pray with you dear Kirstin.

susankay said...

prayers for healing

Rani said...

progress in tai chi? i can so see you doing that. :) it's monday, you made the appointment? another week till your appointment with the doctor in sac. thinking of you a lot, a lot!