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The relentless downward spiral continues

October 21, 2010

[picapp align=”left” wrap=”true” link=”term=vortex&iid=5117292″ src=”http://view2.picapp.com/pictures.photo/image/5117292/water-vortex-colored/water-vortex-colored.jpg?size=500&imageId=5117292″ width=”336″ height=”508″ /]The doctor is “not crazy about” these scans, and neither am I.

Basically, the lesions that were treated with gamma knife on August 2 responded, except one lesion (tumor) that continues to grow (from 1cm to 2cm in 2.5 months — not good), there’s a new lesion next to the T6 spine pushing on nerves (could make me lose function in legs if not treated with radiation), and now my lungs are filled with innumerable small lesions. Guess that last “easy” pill-form chemo didn’t work. The doctor says I have 10 months to live without treatment, maybe double that with treatment. Chance of surviving 2 years: 50%. Of course that means that I could be on the good side of that 50%. I will be on some sort of chemo for the rest of my life, but from what I understand we’re scraping the bottom of the barrel for standard treatments.

I have a call in to the oncologist to see if we now have enough tissue to do a thorough biopsy. It’s possible that this thing has changed hormone status (from negative to positive). That happens in only about 20% of cases, so it’s unlikely. However, if it’s made the magic switch for some reason then my treatment options are far greater and more effective. (UPDATE: He says this is a good idea and he’s looking at the scans to see which tumor would be the best for biopsy, I also tacked on the request to find out if it’s possible to do an assay of the tumor cells in the lab to see what chemo they respond to rather than doing hit-and-miss treatments on ME and waiting three months every time to see if the treatment is working or if I die instead — he’ll get back to me as that technology is new and not all that accurate). We’re getting down to some of the last options for me as far as I understand it. I know I’m not a statistic and all that, and that all the statistics are old (but I’m not in even the old statistics because almost nobody has what I have and all your pink ribbon money goes decidedly elsewhere in breast cancerland). I’d be a fool not to plan whatever life I have without an eye on the possibilities. (Update 2 – Biopsy scheduled for Tuesday the 26th at 7:00 a.m. I should be out of there by 12:00 – 1:00 if everything goes right. I didn’t last time… Oh well.)

What that next option is will be another IV drip chemo (Gemzar/Navalbine). The oncologist says these drugs are “well tolerated.”  I really lit into him about saying that these things are “well tolerated” when he actually has no clue what he’s talking about as far as how they affect real life — just clinical life. I was not a happy camper yesterday. He looked pretty upset and I do feel badly about being what he called quite nicely a “feisty patient.”

Right now I’m back on decadron (evil steriod that takes down swelling around tumors in brain and spine). It is mind-altering for me — I turn into a complete (word I can’t use in a PG blog). I’m also having a lot of back pain as you can imagine, so I’m taking some tylenol with codeine, and that takes the edge off the pain and makes me feel like I need to sleep all the time, except …. I CAN’T because of the evil decadron, which is much like drinking 8 cups of coffee every couple of hours all day long. So much fun. I hope I can get off that after we treat the spine and brain with radiation.

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25 Comments leave one →
  1. Sandy Bartell permalink
    October 21, 2010 10:31 am

    I am hoping, hoping that the hormone status has changed from negative to postitive so that there are more options on the table again. I’m hoping you can get that biopsy done soon. Please keep us posted on this. I’m thinking a lot about you….

  2. Mina permalink
    October 21, 2010 11:14 am

    Love you. Thinking of you often and praying for you always.

  3. Babs McNeely permalink
    October 21, 2010 11:15 am

    Tie a knot on the end of your rope and hold on….
    I and every other FAM, are in your pocket so you’d best wear something big. 🙂

    xoxoxoxo

    Babs

  4. E Lis permalink
    October 21, 2010 11:33 am

    Jumping into your pocket! Wave 🙂

    Jill, seriously I am so terribly sorry to hear this news and can not even begin to fully grasp what you are feeling. I am all for miracles though and providing statistics wrong – afterall they are only an average, so include high and low numbers. I’m praying, sending healing white light, hugs and good thoughts to you and yours!!

  5. October 21, 2010 12:09 pm

    Bah. I’d gotten my hopes all up that since the post I first read of yours being over a year ago, you’d be in a glorious remission right now. I’m praying that all of those meds and biopsies will be able to turn this around for you, Jill!

    Hugs and hopeful thoughts from a mere stranger 🙂

    • October 21, 2010 12:33 pm

      Well, remission would be nice and it’s statistically something of a remote possibility at this point — something like a 1% chance. Once the cancer comes back, which mine did after the 5-year mark,. it’s considered terminal. The sad thing that doesn’t get communicated during pink October is that cancer comes back for 30% to 40% of women, and when it does it kills — sometimes right away, sometimes in a few years — but there’s no such thing as true remission at that point. I get a little tired of all the rah-rah survivor stuff. The truth with much breast cancer is you don’t know if you’ve survived unless you die of something else. I know several women whose cancer has come back after 20+ years.

      • October 21, 2010 1:42 pm

        See? I had no idea. All of the words I’ve been reading all month have never told me this about the 30-40% and terminal. Thank you for your honesty — the ‘Pink’ can only go so far, but truth is what we need to hear. Still, I’ll be rooting for you to be in the 1%.

        • October 21, 2010 2:22 pm

          Thanks. That’s very kind.

    • October 21, 2010 1:40 pm

      Oh, and really thank you for the thoughts. I do appreciate them. I’m pretty cranky at the moment. Steroids!!

  6. Debbie permalink*
    October 21, 2010 1:21 pm

    There is one Bible verse that comes to mind whenever I think of you (and that is often). Jeremiah 29:11 – “For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you, plans to give you hope and future.” Sadly, most doctors seem to be in the business of squashing all hope – I think they must have to take a special class called “How to deliver bad news so the patient leaves my office with all hope squashed.” I don’t pretend to know what God’s plan is – I just know He has one – and it’s a good one, full of hope AND a future. You are on the prayer chains of several churches right now. Let me know what I need to do to help.

    • October 21, 2010 1:53 pm

      Well, I asked. He wasn’t going to say anything and he looked pretty upset about everything too. I really do need to know the monster I’m facing so I can get out the right weapons.

      Tomorrow I’m going to have to see Dr. Eeyore because the radiation oncologist I usually see (Dr. Hope) is out of town. Can’t wait. I think Dr. Eeyore teaches that class.

  7. Thalia permalink
    October 21, 2010 3:07 pm

    Stunned by the news and in tears. My pea brain searches for any information to offer hope, which is my own way to combat feeling helpless. I read about hyperthermia being used for some types of non-responsives cancers and know 1 man who had untreatable abdominal cancer that received it at the Cancer Treatment Center of America in Chicago last year and he’s in remission. I don’t know if it is relevant for your case and hope I don’t offend. Just wish there was something I could do besides pray for miracles.

    • October 21, 2010 3:52 pm

      Thanks, Thalia. I also see alternative therapists at CTCA in Seattle (Seattle Cancer Treatment and Wellness Center). I’ll be there Monday so they can peel me off the ceiling. They’re good at that. I’ll try to remember to ask them about hyperthermia. Cancer tends to like a nice cozy temperature.

  8. mom permalink
    October 21, 2010 3:42 pm

    I, too, pray for miracles for my beautiful daughter, Beautiful both inside and out. A person who can tell just by studying the reasoning behind so many things, just what is good for her and everyone else in the family. God put you on this earth for some reason and a lot of us are seeing that answer. I believe Him and how HE PROVIDES FOR US ALL. EVEN YOU JILL AND DANIEL. LOVE, MOM

  9. Bemused Boomer permalink
    October 21, 2010 4:55 pm

    My stomach flip-flopped when I read the news. Good luck with Dr. Eeyore Monday (your nicknames cracked me up!)

    Thinking about you and sending love and prayers.

  10. Gina permalink
    October 21, 2010 5:49 pm

    Jill, I can only imagine that this journey is exhausting. I am in awe of how you get up each day and you carry on. Just keep taking it one day at a time. My hope is that the days turn into years.

  11. Ellen permalink
    October 21, 2010 6:29 pm

    I’m banking on the good side of 50% too, Jill.

    Very interesting about cancer liking a nice cozy temperature. I recently read some similar about fat cells liking warmth as well. There is some kind of new procedure out now that freezes fat cells and supposively they’re gone for good, unless you nosh endlessly on cheese cake and Haagen Daas then new ones will form. So, maybe it’s a similar concept. It’s certainly worth a try.

    Don’t laugh, but I heard also, that overloading on popsicles kills fat cells, too. Some study was done on kids who had popsicles all the time and they showed no fat cells whatsover.

    Oh, I just remembered where I “read” this. It was on Doctor Oz the other day, (I am embarrased to admit this. )

    I’m sure your doctors were talking about a more clinical procedure, but what would it hurt to eat popsicles or ice cubes with hopes that it will kill off the cancer cells?

    Feisty is a good description of you! lol My Dad used an expression to describe someone of your intestional fortitude, he’d say that you were “full of p!ss and vinegar”. 🙂 Which is a compliment, believe it or not. But I ditto what your Mom said about being beautiful on the inside and out.

    High hopes and tons of prayers,
    Ellen

  12. October 21, 2010 6:48 pm

    Not liking this at all my FAM friend. At all. I don’t even no what to say except really bad swear words so I’ll just zip my lip and light a few candles, kill a few chickens and send my entreaties to the universe.

  13. October 21, 2010 7:15 pm

    I just have trivia right now to contribute. I learned in Weight Watchers in 1987 that you burn more calories when you’re cold than when you’re warm. For what that’s worth.

    I will add, though, that I’m overwhelmed and appreciative, as Jill’s sister, with all the contributions of caring, support, concern and upset about this new news. My husband and I just got this information yesterday afternoon, and we just rolled into the house from the airport, after our little mid-week trip for his 60th birthday, about 15 minutes ago. You Jill fans out there are so strong and supportive and I’m so glad you’re out there holding up my sister on a day like this when I couldn’t do anything other than sit on an airplane and wait.

    Love to Jill and Jill’s family and friends and supporters from Kim and Bill.

    • Ellen permalink
      October 22, 2010 5:39 am

      Kim, and Mom of Kim and Jill, I’m so glad that Jill has such a wonderful, loving and supportive family!!! It’s obvious where Jill get’s her gumption from!

      I think it’s just as hard, if not harder to find words to say to ” The Family”. It does make it somewhat easier when you can inject a little humour into your posts, as it seems that a good sense of humour is a family trait.

      Please know that my constant thoughts, cyber support and gazillion prayers are for all of you.

      Whenever I think of Jill, these words instantly come to mind “I have not yet begun to fight!” (John Paul Jones) If p!ss and vinegar were a cure for cancer, then Jill has it beat.

      hmmm I wonder if we could make p!ss and vinegar popsicles for her, if that would help.

      Do you think Jill knows that we’re talking about her behind her back? Naaaaah. Don’t tell her though, she hates mushy posts and would probably hate the idea of p!ss and vinegar popsicles even more. I know I do!

      Ellen

  14. Sarahtee permalink
    October 22, 2010 3:38 am

    Jill, thanks for the update. More prayers and cyber-support being sent from here to there – especially for all those lesions to just disappear. Love from Sarah xxx

  15. October 22, 2010 5:27 am

    In your pocket with the rest of the bunch, praying for you, sending cyber hugs and much love.

  16. E Lis permalink
    October 22, 2010 9:44 am

    Thinking of you today! I’m a bit on the fiesty side myself 😉 I was speaking to someone I had just met and told him that my Dad calls me spunky. His reply was that was a very polite way of putting it *LOL* I say, go for spunky, fiesty and down out blunt and ornery. As ya know… those ornery folks live forever!!!! Prayers and (((HUGS))))

  17. Murray permalink
    October 22, 2010 4:48 pm

    Though you’ve never actually met us, you’re very dear to us. Great mentors for kids are a treasure, and you’re really great. You’re in our prayers every single day.

    Take care of yourself and keep us posted on Dr. Eeyore.

    Maria

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