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Update: Just the Facts

Readers are so supportive and I owe you big time. And OK, fine, I may not be able to accomplish a "just the facts" entry but I'm way behind updating and there have been developments in the past week so here are some highlights.

  • Pain control: Pillsandbottle a little better since last Thursday when GP, Doctor Zapp decided I'm obviously not getting into see either an oncologist or a physiatrist anytime soon. (No not a psychiatrist, this is a doctor who specializes in musculoskeletal conditions including pain and the "overall" patient). So Dr Z bumped my meds up to a very conservative pain drug that is helping a bit.
  • Oncologists - Ha. See Doctor Doctor Give Me the News where we learn that all Georgetown Oncologists at the Lombardi Center are too busy to take me as a patient, except the new one whose interest is listed as preventing cancer. I think that horse has left the barn and she's taken the wrong job.Mobile_phone_21
  • "But one Lombardi Doctor did say she'd SEE you right?" Yes but only to discuss the case, and see if I like the Georgetown system. Her secretary will call me but I'm not holding my breath.
  • I got many suggestions after the Please Help letter, in fact one was a referral to Shawna Willey who's not just a doctor but also the head of the Betty Oursman Center, which is really another part of the Georgetown University Hospital's Madhouse on the Potomac. Only problem was that when I called they no idea why I was calling, so the referral turned out to be more like a suggestion. Since the other Georgetown Doctors had my file upstairs already this one went nowhere. I appreciate the thoughts and all the nice suggestions but either Georgetown is totally disorganized or they weren't really expecting my call.
  • Boston Katie Paine, survivor and cheerleader, keeps threatening to abscond with me to Dana Farber Cancer Center in Boston and I seriously considered grabbing my records, begging a series of rooms for a couple of nights from the Boston techie and new media community and actually going until I did some digging and found out that Blue Cross or whatever they are calling themselves around the DC area now is not paying for Dana Farber.
  • Now researching other local doctors not associated with Georgetown or George Washington. Johns Hopkins is a possibility since from the far western exurbs of DC it's about two hours away in Baltimore give or take and traffic willing. MapI keep seeing the name Kristy Weber connected to breast cancer and an interest in its willingness to spread to bone, and she's at Hopkins. We shall see.
  • I DID see my friend the reconstructive surgeon Dr Chang from George Washington on Friday. We're set for surgery on both breasts on June 18th. One will be brand new with the expander removed and the capsule cleaned out (ouch) and replaced with an implant. And the other will be reduced and reshaped to match my smaller younger cleavage, or as I call it, new and improved boobage.
  • Clock My insurance will pay for a 23 hour hospital stay. Did you hear that? Not an overnight stay - 23 hours. For surgery on two breasts. In a sixty year old woman, This means I'll go home with two drains in place which I will yet again have to deal with measuring and emptying. And this is not - let me stress - elective surgery. Heads should roll. Don't even start me. I wonder how much a whole night costs? Should I pass the hat in lieu of even having insurance?
  • And I did tell him about the bone scan and how my primary doc was the one to get the report about it, slipped in with notes from the one visit to the abandoned oncologist.  Attempting to discourage my worry about what the heck it is, he will do his best to get me seen my an oncologist at George Washington but stresses repeatedly that he does not think that I will like the system at all and would prefer a more "suburban" setting. Oh this should be good if he's warning me about it in advance.
  • Then he dropped the bomb that he's leaving GW at the end of July and going to New York. This being dissed by doctors is getting out of hand. I'm kidding. I like him. I think he likes me. We're good.
  • Tomorrow first thing I do is call my friend George's internist. I need reinforcements on the pain control and bone issues. Then I call Dr Zapp to give her the updates. And I need to schedule an eye exam. Not to mention a head exam.

To Sum Up

Redmoleskine2 Nobody available to look at bone scan results from February that show something going on in my thoracic bones and spine.

Pain relief so-so but better. 

Fatigue improved since pain relief improved.

Drive-thru for new boobage on June 18th. 

Going home two days too soon.

Then reconstructive guru leaving me for the big city.

Still looking for oncologist team - stressing team, not lone wolf.

I HATE doctor shopping. I want a team of docs who all work together and tell each other what the heck they are planning. But since it's not 1960 anymore I guess that's out.

Otherwise things are great. And I am ordering that 18 month red planner from Moleskine. Maybe two. That will guarantee at least three more years of this kind of fun.

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Comments

Ok first...I can't believe you sound so chipper...hats of to you..

Second..I am SOOO sorry you are going through all that..I am sorry you are sick and then sorry that you have to deal with bullshit insurance issues..

Man...again, glad I am canadian....

Anyway..I hate cancer. I hate it. I have lost and or seen too many people scared and worried dealing with it.

My mom had a scare with a malignant melanoma a couple of years ago and my gran died from esophageal cancer years ago.

I have a friend who has been all clear for a little while after Breast Cancer but she worries every single day.

What a thing.....

Wow, a 23-hour stay. Words escape me at the studpidity of insurance systems. A 23-hour stay means that they view the procedure as a simple cosmetic outpatient procedure. Because 24 hours means overnight, a full day. Totally ridiculous for major reconstructive surgery. You're not going in for physical enhancement, like a 22-year old going from a B cup to a DD, and then retreating to a post-op recovery unit. The problem is that insurance companies do not have codes to differentiate between the two, even though they are completely different circumstances, and you're stuckwith it. I wish I had the right words to say, or the magic wand to wave to fix it. Just know that I'm ranting mad at the situation. But I'm still thinking good things for you and praying for you and your family.

Oh hon... Seriously! You are so due for a change of luck.
What is with these doctors? I thought they all swore an oath to try and help when they could.
:(

Sending all prayers, positive energy, fairy dust, whatever it takes your way.

(((hug)))

DM me your phone number. I'm going to get my network going on this.

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About My Cancer

  • Invasive Lobular Carcinoma
    My form of breast cancer is less common than others. In fact only about 6 to 8% of cases of breast cancer are the invasive form that is based in the lobules, not in the milk ducts.

    Invasive, sometimes called Infiltrating, is a scary word. In most cases this form of breast cancer has been present for 8–10 years when detected by a mammogram or physical exam.

    In my case there was clearly an area that felt thickened or dense on December 6, 2007. A mammogram the next afternoon was not able to detect it but it clearly appeared on ultrasound and was confirmed by multiple biopsies the same day.

    During those 8 to 10 years the cancer took to become apparent to me, there has been plenty of opportunity for those invasive cells to get out of the breast and spread to the rest of the body.

    It is after all, by definition, an invasive form of cancer.

    Each year about 190 thousand women are diagnosed with invasive breast cancer in the US and about 40 thousand women will die of the disease. The larger the mass is when discovered the more risk. Mine had tentacled almost 5cm into the surrounding tissue and two other areas in the breast were discovered as well.

    My chances of living another 10 years without cancer in another area are about 40%. The likelihood of one of my other underlying health conditions doing the job before that is 20%. it took a few months to get used to that idea.

    Now though my attitude is that at least I know what I'm facing. It's just not what I expected. Life changes in an instant.

Funding Cancer Research


  • We Will Not Apeas Cancer

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