Friday, June 17, 2011

Where the Spots Show

What the Imaging Shows After Rads

Okay, here is the final roundup of imaging results after bone scanning, MRIs, and CTs:

  • Improved leptomeningeal disease along the
  1. L cisternal 5th cranial nerve (affects facial nerves)
  2. bilateral inferior cerebellar hemispheres (base of the brain)

  • Decrease in lesion L upper cervical cord at level of the dens

  • Stable enhancing masses (probably hemangiomas)

  • Stable micronodules scattered in both lungs

  • Worsening L hip lesion (qualifies me for clinical trial in SEA)
  • Stable/possible reduction in lesions in:
  1. ~8th rib R lateral
  2. lower thoracic spine
  3. upper lumbar spine
  • Stable small area of low-level activity in L upper sacrum/S1.
  • Stable sclerotic bone lesions

The doctors believe the overall picture is good; it looks very much like I have survived metastasis to the meninges for the SECOND time. We are concerned that I am still suffering from side effects from the radiation, possibly including malabsorption of the nutrition I put into my body religiously every single day, as I am struggling to regain weight. But they have several plans to deal with that if I can't get it turned around very soon!

I am still suffering from a nearly constant vertigo that makes functioning very difficult, and exacerbates the nausea/vomiting issues. I also get a terrible, creepy feeling on the most-treated part of my head/brain that can probably best be described as feeling like I have shingles on the brain under the skull---YUCK!

Mr. Puffy injections clearly affect whatever is happening in my brain for the better, and usually I feel best in the days right afterward. By the time I'm due again, I've usually been stuck on the sofa for several days, feeling my head spin in circles. I am always so grateful for that life-saving treatment, and the loving care with which it is given!

Tuesday, June 7, 2011

Some New Stats

Ooh My Head

Fighting/living through cancer metastasis in the brain (meningeal and parenchymal tissues) has been the hardest thing I've ever done. Well, duh; that's because it's supposed to be impossible!

Hard as it has been includes not understanding consciousness/this world. Easy as it has been is comfortable like alcohol is affecting my brain...kind of pleasantly not quite right but I can "maintain." Best it has been is to sleep in the veil between this life here on Earth and our real lives on The Other Side where LOVE rules.

Recovering after the WBR and whole-spine radiation has not been a straight trend up; it has not been a straight trend down. It has been much longer and harder than I ever imagined. So I would like to remind myself, my family, and this audience of a few of MY statistics in this fight against cancer to hopefully add a little hope to our lives:
  • Diagnosed more than 8 yr ago Stage II cancer; very aggressive form; metastasis to sentinel lymph node; prognosis at the time was 50-50 that I'd be alive in 5 yr. Had "the mother of all atomic bombs" of chemotherapy for over 6 months. Almost died (NDE) of a staph infection at the same time I had no white blood cells and no neutrophils from chemotherapy.

  • Diagnosed more than 4 yr ago Stage IV cancer metastasized to liver, lung, lymphatic system, pelvis, spine, ribs, sternum, shoulders, and facial bones. One rib is completely eaten through/broken. Normally, this much involvement has a prognosis of weeks to months (~6) left to live. FOUGHT IT BACK, even though I never made it into complete remission. Doctor told me the important thing was to get it OUT of the liver! I was in the Sequoias in May when I could FINALLY breathe again. The O3 in the mountains (or by the ocean or after a rainstorm) is good for the lungs!

  • Diagnosed in 2008 with metastasis again to lung. Climbed 8-14k mountains (hypoxia apparently is good exercise for the lungs) and got rid of the spot in the lungs WITHOUT resorting to toxic chemotherapies. And the imaging shows I have a broken back that I'm backpacking with, in addition to a broken rib. I barely notice it; I just have a sore back like any body my age could expect to have.

  • Diagnosed in 2009 with cardiac tampanade with cardiac arrest imminent (meaning fluid was surrounding my heart, crushing it and keeping it from beating properly). Doctors did surgery and saved my life. I also had to survive pleurisy as I recovered, which was extraordinarily painful. I also was diagnosed with metastasis again to the liver, but I was too ill from the cardiac problems to go on chemotherapy. We stayed focused on what we'd been doing and three months later, the spot in the liver was gone without any toxic chemos. I spent most of the year rebuilding. My cardiologist was stunned and amazed when he saw the backpack we did that September.

  • Diagnosed in 2010 with metastasis to the brain, spinal nerve roots, and cerebrospinal fluid. Prognosis without treatment was 4-6 weeks, which I had already outlived by the time I was diagnosed (from first symptoms to diagnosis took 4 MONTHS). Prognosis with treatment is 6 months. I didn't even have the brain surgery for the Ommaya reservoir until I'd survived 6 mo after diagnosis. It's been over a year since I was diagnosed.

  • Diagnosed again this January with metastasis to the brain, this time to the parenchymal tissue as well as the meningeal tissue. So we're back to a prognosis of weeks again. What we're already doing won't treat it. I undergo 6 wk of whole-brain radiation and whole-spine radiation. It's now been 5 months since I was diagnosed, and so far it looks like we have achieved our goal of again beating it back.

I'M STILL HERE! And even though I'm all the way back to square one on rebuilding myself as a human being, I still love my life here on this beautiful Earth with which we were blessed. It is still worth it to me. If you know how hard it is to fight cancer, you know I'm saying a lot.

If there's one thing I've learned by surviving this long with a fourth-stage cancer diagnosis, it's that one thing that arose out of our American history with "The Big C" is an "all or nothing" mindset that just isn't QUITE true. I have never ever ever once made it into remission except a brief window between 2004 and 2006. We're pretty sure it was already back in July 2006; we didn't catch it till March 2007.

So I've learned that I can LIVE, and have a good life and a good time, with cancer cells unauthorized to be in my body. Cancer cells do NOT have the power to kill me, or you, or anyone else. Cancer cells can only overwhelm your vital organs, and it is our job (drafted though we were) as cancer warriors to PREVENT those cells from doing that.

I never fret anymore that I don't get complete remission, no evidence of disease imaging reports. I stay happy with the basic rules that have led to my successfully LIVING with fourth-stage cancer: Keep it out of the liver and brain tissues above all else. You can live with a spot of cancer in your bones. You can survive more than you can ever imagine possible. Building up your own body, your healthy cells, through nutrition and exercise is imperative. Giving your body what it NEEDS to keep cancer cells in check so that they cannot overwhelm an organ is more important than chasing after an elusive "NED" scan you don't really NEED.

It's not all or nothing on cancer cells; it's whether you're alive and able to have a decent life. You can live with a few cancer cells. You can build your body up to where it's just a chronic nuisance. The better you care for your body and treat it the way it was DESIGNED, the easier time you will have with EVERYTHING: the cancer, the chemos, the weakness, the tedious rebuilding after the body has been wasted to a cellular level.

NOBODY EVER DESERVE(D/S) CANCER, but I want us all to remember that you can help your body to LIVE with it and you can still have a good QUALITY life. So above all else, be happy and see your glass as half-full ALWAYS.