Tuesday, November 15, 2011
I came home near the end of August and stayed off the forbidden i.t. treatment for 30 days, then went and got another brain MRI. And found out near the end of September that I didn't pass it.
The imaging showed leptomeningeal metastasis on the Vth and VIIth cerebral nerve running from the Internal Auditory Canal to Meckel's cave in the soft tissue of the brain; and a 6-mm by 3-mm cancerous lesion on the right side of my spinal cord at the base of the brain/top of the spine (C1 level). And unfortunately, the leptomeningeal mets is once again in the form of zuckerguss.
OK, so now I've been diagnosed with metastasis to the brain and LM for the THIRD time. Take a deep breath and go ahead and assume it's still just as impossible to survive as it was the first two times I survived. FORGE ON.
So the time-consuming rounds of doctor appointments and consultations began again. (You simply cannot believe what a full-time job it is for those of us who fight cancer from this side.) And meanwhile, the responsibilities I normally address are left undone...which really gets to be a problem when it's something like filing taxes with the IRS before the October deadline!
DH was obviously getting more and more overwhelmed by the load; in addition to the normal 14-hr day spent at work, DH has to take care of EVERYTHING else these days. The latest diagnosis (and the accompanying decline in my capabilities) was simply too much; I could tell the stress was getting to all of us in the family. We desperately needed a break, any we could get.
So we contacted a reliable accountant with impeccable integrity in Dana Point (Chris W. Johnston, CPA) at the very last durn minute and begged him to please take us on as clients. (He did and even gave up his Saturday; thank you very much, sir!) And then we did the only sane thing we could do -- we ran away from home.
Yep, we just threw some sleeping bags and clothes into Big Blue and took off with $15 cash between the two of us late in the afternoon one Friday. I, of course, could not stand the fact that we have not made it to the Sierras this year, so I navigated us north. And we spent four glorious nights and days just LIVING. So stay tuned as I try to wade through my pictures and write up what I can whilst going through treatment for brain mets again...
Wednesday, September 14, 2011
2424 mi roundtrip
When we got the word in August that I'd been accepted (preliminarily) into the clinical trial and to head to Seattle, we were all so excited! But I did NOT feel up to a big trip; there was just no way could I deal with the hustle and stress of air travel these days. Luckily for me, there was no shortage of loved ones offering to drive me there.
I do truly love traveling by car with a good conversational companion; it is my FAVORITE way to travel because it's like sitting in your living room talking to someone you love only with beautiful changing scenery. So with a couple of gas cards donated by the American Cancer Society, we finally finally finally got to head to Seattle to meet our new/old friends there, both personal (K&B graciously put us up for our stay) and at the Tumor Vaccine Group.
We chattered and blasted the stereo and sang along with CDs and oldies stations for two days of driving North. Do you think the driver pulled over to let me snap pictures? Not at all, so you'll have to put up with shots out the windows and whatever perspective I randomly got!
By now, you already know the rest of the story -- I did NOT get accepted into the trial when we showed up there and had to go back home and stop intrathecal treatment thirty days before getting another brain MRI. But you know, we weren't sorry a bit -- we are so happy to have met the faces to go with the names and voices; and we just loved the beautiful road trip!
Dinner stop was in Weed--the food at the Cafe was fabulous!
Seattle was gloomier than we were!
Tuesday, August 30, 2011
Well, I am so far behind on everything that I can't seem to catch up on anything—but I'm happy for each day that I'm able to do SOMETHING! And I have been trying to get caught up on pictures and posts here, but it's just like everything else in my mundane life right now: neglected!
This blog is really about just two things: fighting cancer and hiking. For too long now, the posts have been focused on the cancer fight. But I have not forgotten the hiking; I just haven't been able to do much of any! But I am happy to report that the ANF reopened in time for Memorial Weekend after the Station Fire, and even more of it reopened in time for the 4th of July.
Of course, I've been chomping at the bit to get out there. So we took a drive the weekend after July 4th to see the status of Hwy 2; reports had it still closed between Vincent Gap and Islip Saddle, which means I can't access the trailheads at Dawson Saddle. I am happy to report we experienced no road closures, and drove all the way from Mountain High to Islip Saddle!
So perhaps when I get stronger, I can take on some of the steeper trails and build my strength up quickly. I am still far too puny and suffering from too many aftereffects of the radiation to be out in the wilderness, though; so I am biding my time.
In the meanwhile, enjoy some pictures of our lovely July drive into the mountains. After checking out the 2, we headed out East Blue Ridge and up to nearly 8000 ft. It's nice to be able to get that high without hiking!
Thursday, August 18, 2011
This is Not A Joke
I must thank all of you who were so kind to donate...those donations went straight into our gas tank and made it possible for us to head for the Tumor Vaccine Group in
We arrived Wednesday evening and met with our hosts, K&B, to whom we are SO GRATEFUL. Their generous offer to let us stay with them in their beautiful home kept worry and stress off of us as we scrambled to get out the door and get to
My first appointment to do background/history and get the first injection of vaccine was scheduled for today. We arrived with plenty of time to spare for our appointment, so it was a leisurely stroll to the research center. They had a room ready for me as soon as I arrived, so we got settled in.
First step was to go through the informed consent again and sign all the paperwork again. After that, we did my list of medications and my history. Then we settled down in my room to wait for the next step: blood work, urinalysis, a tetanus shot, and getting the vaccine injection.
Unfortunately, my history is as far as we got! There was a bit of a discrepant issue regarding Mr. Puffy. You see, it turns out I’m allowed to be on the drug I’m currently taking (according to trial protocol established by the government), but I’m *NOT* allowed to be injecting Mr. Puffy with it before doing the brain
Believe me, nobody was happy to discover this or tell me this. I’m just such an unusual case with what we’ve done with Mr. Puffy that the issue slipped through the cracks until they were doing my history and the doctor realized the
But we came up with a plan whereby I will just refrain from getting anymore injections in Mr. Puffy, perhaps increase my oral medication, and then get another brain
So we are of course disappointed, but we are not disheartened at all, as it’s just a matter of taking another 30+ days to jump through all the hoops again. So I should be able to get the
And this has still been such a worthwhile trip that we are not upset at all about having driven all the way here. I got to get off the sofa and road trip with one of my most favorite persons, visit people and make new friends, and see the incredible beauty of the Northwest. I am stronger for having done this trip; and I am still determined to get to the cure, whichever road takes me there. The doctors and nurses at the TVG have now met me in person, and we are all working very hard to get me into this clinical trial just as soon as possible.
With my rollercoaster of a life, you didn’t think it was going to be too easy, didja??? So, stay tuned!!!
Sunday, August 14, 2011
Yes, I know that I need to catch the blog up on what's been going on with me. But in the meanwhile, here's the absolute LATEST BREAKING NEWS...
As of last Friday, I was officially admitted into a clinical trial that I believe is going to lead to the CURE for the cancer(s) I fight!!!
I will be getting more details on Monday about my treatment schedule, and leaving on Tuesday, so life is kinda crazy right now. I will try to write while I'm lounging around Seattle!
Friday, June 17, 2011
Okay, here is the final roundup of imaging results after bone scanning, MRIs, and CTs:
BRAIN/INTERNAL AUDITORY CANAL
- Improved leptomeningeal disease along the
- L cisternal 5th cranial nerve (affects facial nerves)
- bilateral inferior cerebellar hemispheres (base of the brain)
- NO NEW DISEASE
- Decrease in lesion L upper cervical cord at level of the dens
- NO NEW OR ENLARGING LESIONS
- 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:
- ~8th rib R lateral
- lower thoracic spine
- 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
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.
Tuesday, May 31, 2011
It's been like a really bad drug trip lately. I can't stand the way my brain/head feels. I made the rounds of doctors and imaging, and our best guess is I'm just still feeling some very strong and obnoxious neuralgia from the WBR.
Because, so far, all the imaging tests are coming back that the rads has controlled the spots in the spine and brain...and yet, the spot in the left hip bone has worsened (needed criterion). Which puts me on track for the clinical trial in SEA!
So I'm just riding each day, doing what I know I have to do---nourishing my body as quickly and effectively as I can. Getting my strength and my body built up. Get ready to ride in the car for 2 days to SEA.
I'm not really functioning well enough to focus on anything other than staying as conscious as I can and getting food in me, so I'm not really available these days on the internet. But I AM still here!
Saturday, May 7, 2011
I've continued to worsen in the ear pressure, pain, and puking departments; so I made the rounds of all the doctors.
First I saw my oncologists who take care of Mr. Puffy and the portacath infusions. Like me, the increasing ear pressure concerns them that it's coming from the Internal Auditory Canal (IAC). To me, it feels as painful as a middle ear infection threatening to burst my eardrum. I mean, IT HURTS! So these doctors are glad I am consulting with other doctors and investigating Cyberknife, because what they do won't affect that IAC.
Meanwhile, we're continuing with what we've been doing (although we did boost the intrathecal dose another 5 mg). We all agree I am still too puny to add any of the very toxic chemotherapy back yet, so I remain on mostly monoclonal antibody drugs that should cross the blood-brain barrier.
Friday, April 22, 2011
glutamine, creatinine, wheat grass, vitamins and minerals.
coral calcium; prolamine iodine; and selenium.
But there's another tool I use; a sheet I call the "Health Diary." I simply write down any changes or things I notice each day, and keep track of how I feel each day of the drug cycle. And in reviewing it in its totality from the past two weeks, it's pretty obvious that something is NOT RIGHT. I'm getting worse in some areas, not better.
Looking at the physical effects I'm noting, particularly those ones of "that incredible pressure" that has been building in my ear and where I wake up out of a sound sleep each morning vomiting and with a headache, I'm suspicious that I have an issue in the Internal Auditory Canal again/still. So I'm getting an appointment both with House Ear Clinic again (might as well rule out infections et cetera) and Cyberknife. I remember both doctors at both places stating that Cyberknife could be used as "salvage operations" if general field radiation was not able to treat some of the areas of the brain and spine where lesions might be located.
I did manage to achieve another milestone this week: I was finally able to do a couple loads of my laundry! It might not seem like much to you, but it's one of the things on the scale of what you have to do to be independent...and that's pretty darn important to me.
Even though I still feel pretty yucky, I manage to pull myself up off the sofa each day and get outside into the sunshine and fresh air. I take pleasure in the absolute simplest of things: the fresh air. The sunshine's warmth. The way the breeze whooshes through the pines. The cry of the mourning dove. The buzz of the bees from my volunteer hive. The flash of the oriole's yellow wings. The gift of a surprise bird's nest when cleaning out my flower pots. The horned toad basking in the sun while I plant a few little plants.
Regardless of what lies ahead for me, my first commitment remains to my quality of life so that I can continue to parent my children to the best of my ability each day that I'm here on Earth. I am still not without hope.