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Update, finally.

July 30, 2010

It’s been quite a week. Sorry for the late update but we’ve been gathering and processing information and being careful that we understand what’s going on.

Here’s what’s come out. I have ten brain tumors, all of which can be treated with gamma knife. There was some negotiating with the insurance company, but as long as the cancer is stable in the rest of my body (and it is for now), they’ll approve gamma knife in lieu of whole brain radiation. This is a good thing.

So, Monday I go in for gamma knife surgery again. I know I’ve said I had gamma knife before, but there are different brands/styles. I had one last August that’s called SRS, and it can treat spots 6mm and larger. The gamma knife I will be having on Monday can treat spots 3mm and larger. 3mm is the smallest they can see on an MRI scan. So, I will begin my day early Monday at the gamma knife facility at Northwest Hospital. Because of the number of spots they’re treating, I could very well be screwed into a head frame and on the machine for seven hours — and that’s after being screwed into the frame first, getting a very detailed MRI and then sitting around for three or four hours while they plan their approach.

If the planning and execution gets too complicated, they will stop halfway and continue the treatment on Wednesday. Trust me when I say this sounds like a spa treatment next to a year of chemo. I don’t need visitors. Hank will drop me off and pick me up. I will request sedation as needed and I should be just fine. I’ll have a roommate and a DVD player, and might even be able to use my computer if they have wifi and I can move my head into a spot where I can see to type. I think you can see from the picture of the gamma knife helmet why they ask you if you’re claustrophobic and why intend to request sedation.

[picapp align=”right” wrap=”true” link=”term=gamma+knife&iid=9015059″ src=”http://view4.picapp.com/pictures.photo/image/9015059/white-female-patient-gamma/white-female-patient-gamma.jpg?size=500&imageId=9015059″ width=”380″ height=”255″ /]Recovery from the gamma knife is “Oh, you can go to work the next day.” Remarkable, but true. I think I’ll take a day off to nap, though. I’m not that dedicated.

There are good things and bad things to consider. The good thing is that the cancer remains small and slow-growing — in each individual spot. The two spots I had treated originally responded exceptionally well to radiation, which is also very good. Unfortunately, the sheer number of spots is truly frightening. How many people do you know who have survived a total of twelve brain tumors for any length of time, with more likely on the way? What we faced this week was the hard information from one very experienced doctor who said that with people in my situation the cancer often comes back in numerous new spots in the brain in just a few months, at which time gamma knife might be repeated, but eventually something very bad happens — a stroke from a tumor in the wrong spot, a coma, etc., all of which end in the end, don’t they? This badness can happen whether or not you have whole brain radiation or gamma knife in whatever order, it’s just a matter of the wrong spot in the wrong place at the wrong time, and I have absolutely no control over that.

On the other hand, we also talked with my regular oncologist and the naturopath and the doctor who does the gamma knife surgery AND to the nurses who see a lot of repeat customers (as one said, “people keep coming back and getting treated over the years.”). They all emphasized that I’m not a statistic nor can I assume I’ll be the usual case with the usual expiration date. They have all seen people who can survive for years with one gamma knife surgery after another — not usually with this many spots, though. I think we have established that I don’t need to invest in old-age insurance of any kind. A little reality mixed in with a little hope makes for wise decision making.

As much as I object to chemo, I have also started (as of yesterday) on the oral chemo regime that the oncologist recommended. The naturopath and the brain surgeon also encouraged me to do that. The goal is to keep the cancer stable in the rest of my body so the gamma knife continues to be a viable option for my insurance company. The reason they require that proof of stability is that the insurance companies have had many cases in which people will be treated with gamma knife to the brain only to die of liver cancer three months later, so in those cases whole brain radiation really does make sense (and I agree with them there to a degree — if you’re that close to end-stage liver cancer, then losing some of your mental ability might not be such a bad thing).

Chemo generally doesn’t work on the brain, but one of the of the pill form chemos (called Xeloda) has been showing some promise in crossing the blood-brain barrier. Mind you, this “some promise” comes from a small study of about 40 patients at Memorial Sloan Kettering in 2006 and a couple of observations (as in “Wow, maybe this works”) from an Israeli hospital the same year. This is not a well-studied area, obviously. What’s happening is that more people are surviving their original cancers longer, and they’re finding that the cancer then seeks a sanctuary site that can’t be reached by chemo. The sanctuary site is the brain.

As it turns out, there’s an expert in breast cancer that has metastasized to the brain; she’s located at UC San Francisco. I hope to be able to get down there to see her some time during the week of August 16. She is right now reviewing my medical records, so please pray that she is interested in my case and that she can get me in that week. I don’t know if she’ll have any new information, but I’d like to get on her radar if nothing else.

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23 Comments leave one →
  1. Babs McNeely permalink
    July 30, 2010 8:31 pm

    Jill –
    I am in constant awe of your “grounded attitude w/ a healthy dose of soaring high”.
    (the gamma knife looks like a colander from my kitchen – rofl)
    Hugs,
    Babs

  2. July 30, 2010 8:39 pm

    Wow. . . amazing tech you’re privvy to these days. . . sucks that you have to be a patient to really get the inside scoop. You are in my daily prayers.

  3. Jennifer Traynor permalink
    July 30, 2010 10:09 pm

    Hi Jill…
    Thanks for being so faithful in posting. David and I have been reading and had a couple of questions regarding the original diagnosis five years ago. When you were treated for breast cancer, were they able to remove it all? Did you have to have chemo/radiation to “kill the rest” or did they cut it all out surgically? We’re trying to understand how cancer works (even though cancer doesn’t make a whole lot of sense…but the part about how it “seeks a sanctuary site” and that sanctuary being the brain DID make sense.)
    We’re so glad that you’re seeking, asking, and hoping…

    • July 31, 2010 6:42 am

      Hi, Jennifer. I was first diagnosed in 2004 and I had a partial mastectomy, chemotherapy (for 6 months) and radiation (for six weeks). The surgeon removed all the cancer in that she removed tissue until she got “clean margins.” Unfortunately, at that time the cancer had already spread to my lymphatic system, so cells escaped into my bloodstream, thus the goal of chemo was to “get” those cells. For some people that’s a permanent fix; for others the cells eventually land somewhere else — as in my bones, lung, and brain, which happened in 2009. The original tumor very rarely kills the host with breast cancer, it’s the breast cancer cells that land elsewhere in the body that do the killing.

      Also, we often hear that people are “cured” of cancer after five years of suvival “cancer free.” That’s a mythical number with breast cancer. It can come back any time — 20 years later even — and the latest statistic is that it comes back for 30% to 40% of women.

  4. Murray permalink
    July 31, 2010 4:52 am

    OK – so extra prayers and thoughts for Monday, and for August 16th. You really are amazing.

    Maria

  5. Beck permalink
    July 31, 2010 5:38 am

    Jill everytime I read your blog I am just amazed at your strength and positive attitude. My thoughts and love are with you always, but especially for Monday.

    Hugs

    Beck (from Oz)

  6. Sharon permalink
    July 31, 2010 7:44 am

    As always amazed at your ability to sort out all of the details and make a clear path, I think that is why you are such a phenomenal technical writer you see the fluff and you weed right through it. I have hear great things about the ongoing research in California and I will keep you in my thoughts that you can go see this person. I applaud you for going outside of the box and looking far and wide for the medical expertise that you need. Take care and good vibes for Monday.

  7. Jennifer Traynor permalink
    July 31, 2010 8:07 am

    That makes a lot of sense. In fact, reading your two paragraphs made more sense than all the sites, articles, and books we’ve read on the subject! (Sharon, you are so right!!)
    Are there any floating ideas out there as to the “origin” of your cancer? We know a gal who lives on Beacon Hill who had breast cancer (and, ironically, everyone else but one person, I believe, got cancer too–which made it sound environmental in nature). Do you suppose it was heriditary or environmental? The triple negative stuff sounds quite specific.
    Praying for you today…and we have the 16th on our calendar, too!

    • July 31, 2010 9:32 pm

      Triple negative breast cancer is called “triple negative” (http://www.tnbcfoundation.org/) because has origins other than internal hormones — so it comes from outside the victim, hormone-wise. For some triple negative cancers, the origin is the BRAC 1 or 2 gene. I don’t have the BRAC 1/2 gene. Triple negative breast cancer is the rarest and deadliest form, mostly because the newest therapies against breast cancer directly treat the hormone receptors that don’t exist in triple negative cancer, so treatment choices are chemo, surgery and radiation.

      All doctors and naturopaths say that my cancer came from outside myself. Nobody knows what that outside source is — an infection? a virus? some sort of environemntal factor? If it was up to my lifestyle, then organic food and healthly living caused my cancer.

      The dirty little secret with triple negative breast cancer is that it’s most common among minority communities. It also gets virtually no funding for research. Remember that when you buy a pink ribbon.

      • Jennifer Traynor permalink
        August 1, 2010 3:19 pm

        Thank you for explaining these things that you’ve probably explained many many many times before. For the longest time I wanted to comment…to encourage…to just let you know that we really were reading your posts and praying fervently for you…but fear overtook me. But then I realized how you’ve crossed so many hurdles with boldness and with clarity, so why can’t I learn a lesson from you? In actuality, I have. I am. Thank you!
        The girls are praying for you tomorrow. (I had to explain the difference between “Grandma” and “gamma”…Would you mind coming over one day to explain all of this to a 4 and 7 year old?? he he he! You would explain everything so much better!!) Love, hugs and prayers to you and your family!

  8. Mina permalink
    July 31, 2010 8:19 am

    Much love and prayers to you!

  9. July 31, 2010 8:39 am

    ((((HUGS))))

  10. Thomas Campbell permalink
    July 31, 2010 2:42 pm

    Praying for you all.

  11. Sandy Bartell permalink
    July 31, 2010 2:46 pm

    Jill, I’ll be thinking of you on Monday and hoping those tumors get zapped into oblivion. Sandy

  12. July 31, 2010 3:10 pm

    Praying for this to be the combination of treatments that send the cancer packing! Love ya!

    Penny

  13. July 31, 2010 9:38 pm

    You know, you people are fantastic. Thank you.

  14. E Lis permalink
    August 1, 2010 8:29 am

    Jill, Continued prayers, healing white light and good thoughts! I will send out some extra ones for your surgery. I am glad to hear though the rest of your Cancer is still stable. Stable can be very good. I am assuming smaller also would be better with brain tumors, so that sounds promising. You inspire me, not because of the Cancer, but because of who you are, your pro-activeness and view of the world.

    God bless, Lisa

  15. Sarahtee permalink
    August 1, 2010 5:20 pm

    Jill, it’s Monday here now – I am thinking of you as you prepare to go into that very shiny piece of equipment to zap those brain tumours out of existence.

  16. Ellen permalink
    August 1, 2010 7:06 pm

    Jill, you will be in my thoughts and prayers all day tomorrow.

    I’m proud to be part of your fan club!

    Ellen

  17. Lisa Welch permalink
    August 2, 2010 8:34 am

    Hi, Jill. I’ve gotten behind, since my laptop died with all of my links in its little brain.

    I’m thinking about you today and hoping you are able to be comfortable.

  18. Gina Agne permalink
    August 2, 2010 4:17 pm

    Jill,

    I am in awe of your ability to roll with the punches. I know you really do not have an option but many would not handle the situation with your grace. You are an incredible example for all who know you.

    Gina

  19. August 3, 2010 10:45 am

    I am sure Jill will have a post soon. The zapping went well according to a text message 🙂
    Of course if they turn on the microwave and she has to run to the bathroom, well, that isn’t so bad.

    The people posting here are quite good, or possibly they are fantastic.

    -Scott

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