Sunday, December 27, 2009

It's the Most Wonderful Time of the Year

Hopefully, most of you have been reading my short updates on Facebook, but I apologize for the extended period of non-blogging! I've realized I enjoy reading others' blogs so much more than writing my own. But this stagnant blog has brought comments from friends like, "You know, the fire is over!" (a reference to the picture posted here since September), so I will post more regularly. At least I'm getting one more post in before the end of the year!

My health is very good these days - I'm feeling great and have been able to do a lot of holiday activities. Decided not to travel - was considering driving to Ohio and Oregon to see families - and although I miss our families, I know this was the right choice. I've been told that "stress is cumulative", and I've been feeling that way recently. An intermittent eye twitch and small anxiety attacks have been keeping me cognizant of making choices to limit activites (even the "good" stuff). Seems to be working, and I'm taking things slower and staying relaxed.

Recent blood work (I have blood drawn every 3 weeks) shows the tumor markers are still within the "normal" range, and my last PET/CT scan showed continued "near complete remission" from the neck down; however, in October, a brain MRI showed a little growth of the 2 previously-treated lesions, and 2-3 new small growths, all in the cerebellum. We were moving forward to schedule some more radiation, but I'm happy to report that a brain MRI performed last week showed stability in the growths - actually, the neurologist couldn't see the 2-3 new growths that were visible last time. Very, very nice to hear. Now I'll just go in for an MRI in 6 weeks and we'll see what it looks like.

On the subject of radiation, I've been reading a lot about the dangers of CT scans - seems depending on the calibration of the equipment, radiation from a CT scan may equal hundreds of x-rays and increase future cancer risk. My oncologist recommends I have a PET/CT scan every 3 months, but I've pushed it to every 4 months, which means 1 less a year. The latest research includes all sorts of scary findings that different hospitals, even different machines in the same hospital, are exposing people to various levels of radiation - some well beyond what is necessary to perform the scan. Researchers are quantifying the future cancer risks from multiple CT scans, and they're significant. Any traditional treatment choice involves a risk-benefit assessment (chemotherapies have risks for causing secondary cancers, too), but most docs will tell a patient, especially one with active disease, that frequent scans are necessary to catch disease progression before it does any damage. My new plan is to ask radiologists to give me the radiation output numbers for the CT machines. Even if I can't confirm that the machine is properly calibrated, at least I'll let the docs know someone is paying attention.

Unfortunately, I do have a new condition to contend with. Herceptin and Tykerb can both cause a decrease in heart function (the antibodies in the drugs turn off cancer cells, but also turn off cells in the heart). My latest echocardiogram showed heart function down 10-15% from the baseline. Good thing is - this condition is almost always reversible. To remedy the lowered heart function, I'm taking a blood-pressure medicine that should make it easier for the heart to pump. If the blood pressure med doesn't work, I may go off the Tykerb and Herceptin regimen to allow my heart function to return to normal, after which I will get back on the regimen. Luckily, I don't have any symptoms of the decrease in heart function (e.g., shortness of breath or swelling in the feet).

In October, I added another doctor to my arsenal of specialists. He's an MD practicing internal medicine and also "integrative medicine" - the prevention and treatment of disease through the use of diet and supplements as well as traditional medicine - also known as "orthomolecular medicine", I believe. Unlike any of my other doctors, this one doesn't tell me, "There's nothing you can do," and "Eat anything you want." When I hear that stuff I just feel defeated - it affirms my perception of the medical establishment as a cult, or a big pyramid scheme with the drug companies at the top. This new doctor has given me science-backed recommendations for diet and supplements, and I'm happy to have this kind of professional support in my life now.

Come January 1st, I should be covered under a new insurance! I took advantage of my employer's open enrollment, and switched from CA Blue Shield HMO to Anthem Blue Cross PPO. Here in California, Blue Shield and Blue Cross are totally separate companies. The PPO has higher monthly premiums and slightly higher co-pays, but a normal-ish deductible. I made this change to be able to (hopefully) see any doctor I wish, and to increase the chances that recommended treatments will be covered. I spoke with many benefits and insurance representatives and read a lot of materials and was assured that, since there would be no "lapse" in coverage, all my current treatments would be approved and covered. I thought maybe pre-existing conditions exlusions could be invoked here, but I was assured this would not happen. I'm still nervous.

My battle with CA Blue Shield is moving very slowly, as BS drags its heels to respond to the latest requests for "retroactive authorization". I am still very hopeful that the denials will be overturned. By switching insurance, I am hoping to avoid any future denials of treatment. In fact, Tykerb, the drug I am currently paying for out-of-pocket, was recently proven to have synergistic cancer-fighting effects with my other treatment, Herceptin (which insurance is covering). This new research should bolster our request for insurance coverage, since I've been denied previously b/c of the lack of research showing positive results! After the New Year, my onc. will be submitting an authorization request to my new insurance, so keep your fingers crossed!

And finally, Healthcare Reform. Although I am unhappy that the Senate bill does not include a public option (and it looks like inclusion of any public option will mean failure of the bill), I'm encouraged that it still includes provisions to restrict insurers from revoking coverage at a moment's notice and significant limitations on pre-existing conditions exclusions. And while I'm elated that millions of uninsured people will have access to affordable healthcare, I am deeply disheartened that the treatment of the newly-insured will still be determined by insurance companies, who are concerned about shareholder profit and not effective and efficient provision of healthcare.

My deepest gratitude goes out to everyone who has supported us this year. Thank you from the bottom of our hearts! Happy Holidays!


  1. That's great news! BTW, love the picture.

  2. Excellent news! Great to see you over the holidays. I'll keep my fingres crossed on that upcoming brain MRI.
    - Catherine