Less briefly

Yesterday was somehow filled by back to back appointments with my oncologist and the surgeon.  Always amazing to me how two quick appointments can fill up the day.  I think the three hour nap I took when I got home helped!  It was the sleep of intense relief.

I didn’t really realize until getting the pet scan, and waiting through the weekend for the results, just how anxious I was about it.  It has been the assumption all along that the cancer had not taken hold elsewhere, and yet we had no hard evidence that this was the case.  I spent the weekend feeling pretty gloomy, and imagining what it would mean if they found tumors in the liver.. in the lungs.  So a clean scan, despite the fact that it was precisely what we were expecting, was an intense relief.  (“yipeeee….  it’s still stage IIIc not stage IV!!!”)

It doesn’t, however, mean much of anything about course of treatment.  I will still be receiving 6 months of chemotherapy.  This will include a drug called Erbitux (I just made the mistake of looking up images of the side effects.  Yikes!) It will also include Oxaliplatin, the drug responsible for the numb hands and eventually feet that I experienced last time around.  It is definitely feeling harder this time to march into 6 months of chemo, KNOWING what it does.  Last time I was able to take a real, “hey.. how bad can it be?” approach.

Knowing what’s coming, we’re being a little more proactive this time about finding ways to diminish the side effects, most especially the nausea.  Unfortunately, there’s no way of knowing if any of it works until you’re in the middle of it!

Today is my own.  I have no appointments scheduled.  I will spend it at the pool hall.  On thursday and friday, we will be getting second and third opinions that will most likely confirm the need for the chemo, and reassure us that we’re on the right course.  Early next week I will probably have the port placed, though it isn’t scheduled yet.  Chemo will start on the 15th.  One of the things that I’ve hated most about being sick over these years has been the loss of control.. the feeling that your time stops being your own.  To some degree it will be a relief to get into the rhythm of chemotherapy.  To know that the first three days of every two weeks will suck, and that I’ll be attached to a pump, but that after that I’ll be left alone for 10 days to recover.

Tomorrow byram healthcare supplies will be shipping out my next order of bags.  This time opaque!!!  Also, from a different company that makes products geared towards a more active lifestyle.. lower profile and more flexible.  I think this will be a real improvement.  I’ll keep you posted.  Given the side effects of some of the drugs I’ll be on, I don’t think that the sort of bowel regularity necessary for the irrigation approach be expected until after treatment ends.  In the mean time, I’ll be trying to find the least offensive products possible!

The Assless should be back in my hands on friday!  Sweet!

That’s it.

0 Replies to “Less briefly”

  1. Ezra: Thanks for the update. Good luck on the assless. We want fotos.
    BTW: I have a friend just diagnosed with stage 4. Some of what I have learned from you is going towards supporting her and her family. So thanks for that as well.

  2. i don’t know if you would listen to a stranger but there are things you can do to reduce the neuropathy. one is dunking your hands in ice water during treatment. yikes! not comfortable but i’ve read that it works. another is vitamin B something (i think B12 but it could be another B).
    good books on the subject are Antioxidants Against Cancer and Questioning Chemotherapy by Ralph Moss.

    speaking of B12, cancer patients frequently don’t have enough since chemotherapy destroys the stomach lining’s “intrinsic factor” which is necessary to make utilize the B12 in food or pill form. cancer patients pretty much need the shot in the butt to keep any B12 in their system. when my friend abe (anal cancer) was in Calvary Hospice, they pretty much refused to give him a B12 injection even though he was begging for one. he could have all the chocolate cake he wanted but somehow the B12 shot was controversial. they finally agreed to give it to him but procrastinated so long that it became a non-issue

    BTW, years ago i went to an integrative doctor who pretty much cured my asthma. i would sit there and get weekly IV infusions of vitamins and anti-oxidants. i would pass the time reading, napping or eavesdropping on the conversations in the room of others who were similarly tethered.

    on several occasions, women with cancer would be overheard telling their neighbors that the high dose vitamin infusions really minimized their side effects from chemotherapy and that their oncologists couldn’t figure out why they weren’t getting sick as expected.

  3. Hi Ezra,

    I’ve been reading along quietly since 2008, never knowing what to say, always hoping for the best. I’m really glad you got this most recent good news! Good luck! Hope you have a great day at the poolhall.

    Tailwinds on The Assless,
    -T

  4. Ez,

    Glad to have an update; you’ve been in our thoughts. Continued, and unrelenting, positivity from Philly. Can’t wait to see the Assless’ spruce-up!

    Thoughts are always with you.

    p

  5. Hi Ezra! I happened to read your blog since my boyfriend Stefano has been following you on flickr.
    Well, what should I say. I keep reading it and the more I read, the more I admire you and your strenght. My mum had breast cancer a couple of years ago (a bad kind, doctors told her she had like 30% of possibilities to survive) but she made it. I believe, though I’m not really into those zen and karma things, that the body reacts according to how your mind reacts to this. And I’m strongly convinced that’s exactly what happened with my mum. She never let the cancer overcome her. She just acted, as much as she could at the time, given all the medicines and all the side effects (like the ones you describe), as if nothing was happening. But I know this took probably the strongest effort ever. That is why I really admire you.

    If you ever come to Italy, let me know. It’d be a pleasure to take you and your girl around and let you eat real pasta 🙂

    I’d like to take a portrait of you too, if you like.

    Thank you for sharing all of this. Don’t give up.

    Maddalena (from Italy)

  6. That’s great to hear, Ezra. It took me a while to get up to speed on gentle soap and moisturizing while on erbitux. You’ll get it faster, I’m sure. Good luck with it.

  7. You give me great strength each time I read your postings and I think about you many times during the day when I am faced with much less intrusion and adversity.
    Continue to get through this thing with the grace and dignity that you have shown each day. Please let me know if there is anything I can do to help.
    Gee,

  8. well if nothing else, a trip to Italy and a tour from Maddalena is worth fighting for, right?? 🙂
    I’ll let you know if I hear anything from the folks I work with about the neuropathy.

  9. Ez, Congrats on cancer NOT making a home by spreading out.

    As one former cancer patient to another…this is GREAT news.

    Good luck with the Assless.

  10. shoot some pool, mang. ya like nine ball? i like me some nine ball. snooker too. when i’m in thailand.

    anyway. go hard and strong like ya always do.

  11. from Dr Ralph Moss

    Israeli Supplement Targets Colon Cancer
    themossreports | November 6, 2010 at 12:28 pm

    Tel Aviv scientists pioneer food supplement

    A new food supplement from Israel targets colon and rectal cancer, as well as ulcerative colitis and other bowel diseases. The product, which has yet to hit the world market, is called Coltect. It is a combination of green tea polyphenols, curcumin powder from the turmeric root and the trace mineral selenium. Its effects were described at a recent oncology meeting and it is the subject of two clinical trials.

    Results were presented at the 2010 American Society for Clinical Oncology (ASCO) Gastrointestinal Cancers Symposium. The authors, from Tel Aviv Sourasky Medical Center, tried Coltect alone or combined with a common drug, 5-aminosalicylic acid (5-ASA), in cell line and animal models of colon cancer.

    Depending on the dose, there was up to an 83 percent inhibition of cancer cell growth using Coltect. In the animal model, the combination of Coltect and the drug 5-ASA reduced the number of precancerous lesions from 66.5 in the control group to 20 in the group that received both agents. The authors concluded that Coltect “can be administered as a chemopreventive regimen to prevent” colorectal cancer.

    While waiting for Coltect to hit the world market, one might consider taking a combination of green tea polyphenols, turmeric (with its key ingredient, curcumin) and Brazil nuts (a good source of selenium–use the kind that you have to shell yourself).

    As for 5-ASA, it is not available without a prescription. But it is a derivative of salicylic acid and is chemically similar to aspirin. A 2003 journal article concluded: “Preclinical, observational, and clinical data consistently show that non-steroidal anti-inflammatory drugs (NSAIDs)—particularly aspirin—reduce colorectal carcinogenesis” (Hawk and Vine, 2003). So you might ask your doctor about taking a baby aspirin (81 mg) along with the anticancer food components.

    Colon cancer afflicts over 100,000 Americans each year. Perhaps some of these cases could be prevented by the judicious use of anticancer foods, supplements and drugs, all of which are readily available. The toxicity of such agents is low and the cost of all together is less than a dollar a day.

    References:

    http://clinicaltrials.gov/ct2/show/NCT00793130

    http://biopromedical.com/Coltect.html

    http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=72&abstractID=1745

    Hawk ET, Viner JL. Aspirin: still learning about the wonder drug. Gut. 2003;52(11):1535-1536.

  12. I read on another blog (Life & Breath: Living with Cancer – Linnea Duff), that she was able to mitigate some hand numbness caused by her (different) chemo drug by putting her hands in ice water during the infusion. Apparently this constricts blood vessels, makes less drug go to the hands, and may help. Think about it! You’re not likely to have any mets in your hands.

    I’m excited to read about your Thanksgiving. You need some fun! 🙂

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