GRADUATION DAY!!!

After Six Very Long Weeks

I've survived whole-brain and -spine radiation, but barely! It's taken home health care and family members getting me up, dressed, and into the city for fluids daily. I am struggling and miserable, but I am still here and looking forward to feeling better every day!


One happy surprise was noticeable immediately to me: no "lightning" show in my head. "Hey, I'm not getting the same dose!" Yep, and only two blasts to the head-- no more whole-spine rads these last four days. HALLELUJAH! Lord knows my digestion system needs the break.


I also am still struggling with the "snowblindness" caused by the whole-brain radiation (WBR), so I will have to write more when I can. Meanwhile, I am just so very very grateful to have made it through the entire Rx of radiation!

The last day, smooshed facedown to get a "brain boost" dose of radiation.

Aw, they even gave me a certificate!
Good, because I feel like I EARNED this one the hard way!

The brown tracks on my head weren't there when I lost my hair-- they give away where the edge of the radiation fields were!



NOT GIVING UP!

I'm Gonna Crawl

Over Broken Glass

It has been quite the fight since I last posted on the 14th. First off, I've been unable to get/keep/digest any nourishment to speak of in me since March 10th. Second, I can't stop vomiting; and third, I can't stop losing a bucket's worth of water with each and every bout of horrible diarrhea. Sorry for that graphic, but this is the nitty gritty part of what it means to fight and survive cancer.

The whole alimentary canal is insulted from the relentless radiation to the point of where I can't even swallow water! I normally drink 2 L of water each day IN ADDITION to other fluids. Now, I reserve swallowing for sips of Zipfizz or Odwalla's Vanilla Almondo, trying desperately to get as much bang (nutrition) for the buck (pain) as I can. We also try to get bites of yellowfin tuna in me. I can only get a few bites in me; my fluid intake is scarily low (24 oz yesterday).

So to avoid hospitalization, I have/had to go EVERY SINGLE DAY for these past two weeks into the city to the Infusion Center to get IV bags of fluids/potassium. The hour ride there is hellish for me; my entire digestive tract behaves as if it's been destroyed by radiation poisoning. I can hardly swallow or breathe for the swelling in my throat and esophagus; it feels like I have suffered "clothesline trauma" (just ask anybody who has ever run full-speed into a clothesline what that's like). And I have terrible pains and cramping from literally STARVING because I'm unable to properly nourish myself---the cramping folds me over and my stomach feels like it is WASTING. On the other hand, it also screams pain at me for 20 min if I get even one bite into it.

AND then there's the very real, dangerous issue of the fact that my input is greatly lagging behind the outflow. This is so NOT GOOD.

Last Saturday, I got my first visit from my home health nurse. He told me I was dehydrated AGAIN and would need to go in for fluids. I thought the nurse could do that and save me the trip to town. Nope, have to have a hospice nurse for that! But he did tell me one thing I didn't know -- I could go on hospice temporarily and then go off it. Something for me to consider!

Since pinching my skin isn't really working as a test for me, I asked him what other symptoms I might have.

"Headache, nausea, the weakness in your arms and legs..." Well, I passed that point weeks ago, and those are symptoms I'm typically dealing with throughout each day and night. "Confusion, lightheadedness, fainting, more severe muscle pain and cramping..."

Ok, been there, done that, too. But that gave me a good measure to go by, and by 8:30 Saturday night, I could tell I was getting worse and worse and that we needed to go to the ER. We had me ready and in the car by 8:50 and took a leisurely "dry run" to our newest hospital. Good thing, as it was raining AND we hit a few detours for road construction! We arrived by 9:30. I waited in the car while they retrieved a wheelchair and mask (low white blood cells, currently) for me, then I sat all covered up in the foyer of the waiting room so I wouldn't be in the general populace.

Unfortunately, hanging in the ER to be seen as the small-potatoes case meant seeing a lot of stress, heartbreak, and trauma in the people constantly entering and exiting the ER. I'm not sure what time they called me back, but it wasn't an excessive wait like the other ER. And we hadn't found any Urgent Care places open this late on a Saturday night.

Once I was called back, life got A LOT better. The nurses and doctor were great; the (private) ER room was state-of-the-art and beautiful; and they even cleaned it extra-special for me because of my low white blood count.

I informed them I am on the way to the cure, but that I require just a little bit of help from them along the way: hydration. They inform me yes, I do indeed need to be there for hydration, and draw blood. Boy, were they surprised and happy to see ALL I needed was hydration; I am holding my own on electrolytes and protein! The doctor told me she was impressed at how well we are taking care of me despite the obvious dehydration.

Getting the first bag of IV fluids helped ease the nausea and horrible abdominal cramping, and I felt HUNGRY! But that's been the frustration of this --- I'm SO HUNGRY that I'm starving and yet I physically have not been able to eat or digest food. Well, I was sure gonna give this opportunity (feeling better from hydration) my best try!

"Will you go get me a double-double with just meat and cheese, pickles, and grilled onion? And have them cut it in quarters?"

My caretaker thought I was crazy. "Can you even have food in here?"

I thought my caretaker was crazy. :Like we can't nourish me?"

We worked it out, and I got the burger about half an hour later, just as I was dozing off. AND I even managed to get 1/2 of it into me!!! Yay! The nurse and doctor came to check me out, decided another bag of IV fluids was necessitated, and got it started. I closed my eyes and managed to doze some more, grateful for the warm food in me.

The ER finished up with me at 3 a.m. and we headed home. Now that we knew about the detours, the leisurely drive home in the rainstorm took us only 30 minutes. Not bad! And I really liked the care at the new hospital, in addition to its gorgeous appearance and new new new things. No more having to see that ER doctor at the other hospital who almost killed me in May 2009, THANK GOD.

After we got home, I made it under my own power (with my cane) from the car into the house to sleep on the sofa (I am still too weak to make it to my bedroom and my caretakers still have to keep an eye on me at all times).

And I am still hanging in here. One more week, I kept telling myself that early Sunday morning after we came home from the ER. But, oh, what that week has been like for me! And honestly, I'm still not ready to talk about it; so I think I will stop here and tell you more about this past (last!) week when I'm a little more stronger.

Thanks for staying with me.

On The Brink

If the point of "burn and poison" is to bring my body to the brink of the death, we achieved that this weekend. Treatment finally overwhelmed my body. Last Thursday was the last time I got any food or drink to stay in me.

By Friday, my entire digestive system was shutting down from the insult of radiation. By Saturday, I couldn't even eat although I felt like I was starving and my stomach was cramping from feeling so empty. And all throughout, I was losing massive amounts of fluid via vomiting and diarrhea brought on by the radiation (poisoning).

Sunday came, but I didn't get up to see it. I was just too weak, too ill, and too sore. By 4:00 p.m., my family knew something was wrong and showed up to take care of me. They were ready to load me up and haul me to the hospital, but I insisted we stay home.

"There's only two choices here: either go to the hospital and get fluids in me until the doctor can see me tomorrow; or stay here and get fluids in me until the doctor can see me tomorrow. And HERE is safer than the hospital!"

We tried all night to get fluids and meds in me to mitigate the fluid loss, but the vomiting and diarrhea were just uncontrollable. What a miserable night! I finally got some sleep around 8:00 a.m.

Which, unfortunately, is when I *should* have been riding to the doctor, if we'd been thinking clearly. As it was, I made it there in time for my afternoon appointment. The doctor knew something was wrong the instant I walked in. I was too weak, and he thought I even LOOKED dehydrated. I'd dropped quite a bit of weight very rapidly, too. He suspects my potassium has dropped low, so he sent me straight to the blood-draw station and told me to come back for IV fluids in the morning.

I told him I wanted to quit radiation, that my entire alimentary canal is too insulted to continue. I can barely open my mouth to take a bite for the TMJ. I can barely tear a bite or chew food for the gum and teeth issues. I can't bear to swallow for the raw, sore, SWOLLEN throat and uvula. The acid reflux/heartburn/indigestion is IMMEDIATE and on a scale I couldn't have even imagined -- and even water triggers it. My stomach hasn't digested food properly since last Thursday morning; it hadn't even emptied itself in 11 hours when I vomited Friday morning! My stomach and guts are cramping in pain, from hunger as well as vomiting, dry heaves, and inflammation from the insult of radiation. The frustration and even despair I feel is genuine.

I am now so weak I cannot care for myself. I cannot shop for groceries or drive myself to my daily appointments. I cannot prepare my own meals. I require assistance to do laundry, bathe, and dress. It is finally time to request Home Health Care. The doctor is ordering it and we will see what coverage we might have for it.

Well, for all my whining, the doctor wouldn't let me quit radiation. It's a very very BARBARIC weapon, but it is still the weapon necessary at this time. He told me they would help me get through it, but get through it I must. Even though it is the radiation that is overwhelming me and NOT the chemos I take, we did opt to at least drop everything else while we get me through all the rounds of radiation. The doctor feels that should reduce some of the toxicity with which my body is having to deal.

So, I'm staying out of the hospital and sticking with round-the-clock care at home and at the cancer center. I made it through today's radiation, but BOY do I feel ILL!

Hair Today; Gone Tomorrow

The Incredible Three-Day Hair Shower

It was nearly eight years ago that I learned I would probably lose my hair to the chemotherapy regime being prescribed then. I contacted someone I knew had lost their hair before to therapy and asked what I could expect.

"It falls out over a course of a couple days about three weeks after you start," he told me. Boy, was he right. That is EXACTLY what happened. I still remember what an incredible and strange experience it was

Since then, I've been blessed to not go completely bald all at once; my hair has fallen out so slowly that I usually have SOME growing. Not so this fourth time!

When I woke up on Sunday and jumped in the shower, I noticed a larger-than-normal amount of hair coming off my head and sticking to my hands as I was trying to shampoo. Uh-oh! I know what that means! The incredible three-day hair shower has begun. I quickly grabbed my trusty losing-my-hair drain cover to spare our pipes from what I knew was coming.

Honestly, having it start to fall out is a RELIEF, because the radiation already killed those hair roots after the very first dose. Since then, I have felt every single one of those zapped hair roots as they have itched, stung, prickled, and felt like red ants biting my scalp since radiation began last month. And my hair doesn't even LOOK good; the radiation has destroyed it. The only purpose it is serving me right now is as SOME warmth for my head.

Still, I shampooed gently with the recommended baby shampoo, not rubbing and trying to let the hairs fall out as "naturally" as I could. I stepped out of the shower and surveyed the damage:

Day 1: After the morning shower and (light) baby shampoo.

When I told the others the hair shower had begun, they weren't quite so sure. "It still looks okay," they told me as they surveyed my head. Yeah, that's just 'cause there are A LOT of hairs on my head! And I do have a ways to go before they are all out. Like I said, it's an incredible three-day hair shower.

So Sunday night, my head was itchy and prickling and I tossed and turned from it. Monday morning, I repeated my shower and gentle baby shampoo rinse:

Day 2: After the morning shower and shampoo.

Surveying the damage afterward, the accumulation from Sunday's and Monday's showers was starting to look more significant:

After Sunday's and Monday's morning showers, the loss is more obvious!

Did I mention Sunday night was kinda miserable, with all those itching, prickling, stinging, hair roots? Well, that was NOTHING compared to Monday evening and night. Everywhere I went, hair plopped behind me in CHUNKS. Everytime I bent over the computer keyboard, hair plopped into the cracks. Everytime I went to take a bite of food, hair fell onto my plate. Laying my head on the pillow to sleep was impossible for all the ITCHING. I had hair down my back, itching me. I had hair in my eyelashes, poking my still-sensitive (sunblind) eyes. When I slept, hair got sucked into my nose and fell into my mouth. HAIR EVERYWHERE. Ugh.

Tuesday morning, and the next shower. By now, if I didn't know better, I'd have thought somebody had punked me during the night with a bottle of Nair or something... hair was beginning to come out in HANDFULS.

Day 3: After the morning shower and shampoo.

Now, the hair thinning/loss was much more obvious. AND...I could feel a kind of reverse "V" where my scalp was bare going up the back of my head, making it easy to know where the beams of radiation are being concentrated the most. I opted to wear a hat to hide the mess.

But by the time I got home from Tuesday's radiation, I'd had more than enough of this awful stuff posing as hair on my head. It just wasn't worth it. I told everyone I was heading back to the shower, and this time I grabbed the shampoo and SCRUBBED my head.

The hair continued to come out, clump by clump, as I gently rubbed my scalp and repeatedly rinsed it with a blast from the sprayer. If it hadn't started on Sunday, I would've SWORN someone had punked me with a bottle of Nair, it was that DRAMATIC. By the time I stepped from the shower, I had only a few wispy long hairs standing straight out, making me look like the old toy character you magnetically "put hair on" from the days of my youth.

Day 3: Second shower and shampoo; there goes the rest of it!

Bet it doesn't look this bad when you clean your shower!

We got the clippers out and trimmed the few remaining strands down to a more reasonable length (astroturf). Then I returned to the bathroom to survey the final damage:

It looks (and even sorta feels) like steel wool instead of normal, nice hair.

And by the end of Day 3, virtually all of my hair is now in the wastebasket!

When I went for radiation on Wednesday, the tech stared at my bald head.

"I just saw you Monday, and you weren't bald!" she said.

"Oh, I washed the rest of it off yesterday," I told her.

"You can do that?" she asked.

"Just like someone put a bottle of Nair on it."

And that my friends is the Incredible Three-Day Hair Shower. Fortunately, most radiation oncology patients do NOT get whole-brain radiation, and thus do NOT experience this phenomenon. And many of today's chemotherapies are much gentler and do not elicit this result. But if you DO find yourself facing it, all I can say is just keep showering till the itching stops!

Another Anniversary!

Four Years (and Halfway)...and a New Buddy!

I reached a very important milestone today; it is the fourth anniversary of when I learned cancer had returned and spread throughout my body. The news was very grim then: cancer had metastasized to my liver, leaving my life in imminent danger; as well as to my lung, lymph system, pelvis, bones in my spine, ribs, sternum, shoulders, and face. Cancer had even eaten one rib in two; we know now that it would take more than three years to heal.

My doctors are first-rate; nobody "sent me home to die." We decided to never give up, and here I still am. Drugs that have saved my life weren't even available when I first began this journey. And hope that I have now for a cure wasn't even on the horizon. So I am determined to make it all the way to the cure; I know this: each day I live is another day closer to the day we have the cure!

I have more reason to celebrate today: I received my twelfth dose of radiation, which is the halfway point. Twelve done and twelve to go. It's grueling and painful, so I am happy to be on the coasting-downhill side now. I am determined to make it through all 24 prescribed doses.

And I have the best news of all: I am very cheered up by the arrival of our newest golden, a male to keep my girl company. My new hiking buddy is a more creamy golden retriever, and he is just 7 weeks old. Rosie absolutely adores him; I think she thinks he looks just like her little brother!

So, meet Buddy! It won't be long till you see us out on the trails.

Buddy.

Buddy and Rosie are already inseparable and play tug-of-war together.

Snowblind!

When Lightning Strikes

Remember that lightning in my head/eye I told you about last post? Well, guess what--it turns out that luminescence was something the radiation oncologist called "backscatter" from the "scatter" type of radiation to which we are subjecting the dura of my brain. As the "backscatter" hits fluid in the structures of the eyes, it sort of flouresces it. And that is apparently what has "sunburned" the retinas of my eyes.

At first, I thought I just had dry eye again from the small tumor shown in the MRI to be crowding the Internal Auditory Canal. So I treated it as my opthamologist has taught me, putting in special drops and taping my eye closed at night. That seemed to take care of it, and although my eyes felt "itchy" all weekend, it was okay.

I also got an additional 2-day reprieve from rads because the machine required repair. So it was Wednesday before I received radiation again. By then, the eye was unusable, constantly dripping and causing my nose to incessently drip. Hey, shouldn't it be getting BETTER, since we're zapping the IAC for cancer cells??? I had no choice but to tape it shut around the clock, not just at night. The techs asked me if I wanted to see the radiation oncologist, but I assured them I was doing what the opthamologist has me do for what I thought was dry eye.

Unfortunately, I woke up the next day with it MUCH WORSE. You will not believe how such a little nuisance thing can make you SO miserable. In addition to the constant weeping of the eye and dripping of the nose, the eye itself feels like there is broken glass and razor blades in it, even with the eye closed. Trying to use my eyes was impossible and only made my head ache. I gave up and had to close my eyes until this situation improved. It is a truly painful condition.

So Thursday night, I'm standing in front of the mirror, blinking and trying to see to brush my teeth between keeping my eyes closed to mitigate the razor blades and broken glass feelings. Why does my HEAD look CAVED IN? I touch by my temple. OUCH! Not only is my head now concave there, it's also very painful to touch. I get DH, and he verifies this is not my imagination -- my temple has clearly caved in and is now weirdly concave. We check carefully for any signs of swelling, which may indicate hydrocephalus (a very horrible possibility when fighting mets to the brain). I see none. It is clearly not a swelling above my temple, it is a concavity at my temple.

I call the doctor on call and leave a message: "I don't think this is an emergent situation; but if it is, please call me back!" Friday finds me consulting with the radiation oncologist before undergoing my daily rads. And guess what -- he's never seen anything like this concave appearance before. Weirdness idiosyncratic to me. Gotta love it.

By this time, I'm being LED around, temporarily blind, as I MUST keep my very painful eyes closed at all times to mitigate the misery. The doc spotted right off that this was not dry eye, but that the retinas have become "sunburned" by the "backscatter." He told me the drops I was using were NOT going to do the job, and wrote two prescriptions for me.

He also surmises that the concave appearance at the temple might actually be caused by inflammation of the optic nerve. But basically, we don't know; and I don't think I dare stop rads because of it. But boy, you can sure tell by that dent what a WALLOP the WBR packs!

So all weekend, we have administered the antibiotic and anti-inflammatory eye drops every 8 hrs, and the eyes are improving. I think it will be better very soon! At least I can see enough now to attempt some reading and writing. Stay tuned for whatever lies ahead next!

Another Tour

7/24

No, I'm not dyslexic...I've now completed 7 of 24 rounds of radiation. And it makes me feel ill pretty much 24/7, but I'm still hanging in there. One foot in front of the other, just like on the backside of Whitney. Yes, it's hard and slow. One of the hardest things I've ever done, definitely. But we keep checking the clock, and so far we think there's still enough time to reach my goal. So I press on.


I knew beforehand the drawbacks to doing WBR and whole-spine radiation. When it became clear I wasn't going to be able to skip it altogether, I knew what I was in for -- another tour of the Valley of the Shadow of Death. And that, it is. But after only two rounds, I could already tell the difference in the spinal nerve roots in my lower back, so with the misery from radiation has come relief from cancer, making the nuisance stuff more worthwhile to me.

Here's what a day in my life is like right now:

I wake up out of a sound sleep, knowing I am about to VOMIT RIGHT NOW. I grab a trashcan next to me and throw up into it. There is nothing in my stomach, but I am throwing up white foam that tastes like NASTY medicine from my oral chemos the night before. My head hurts, too. I stagger to the bathroom, on feet that sting and burn with pins and needles and PPE, where my guts then explode for the next 15 minutes. I finally get to brush my teeth, and note part of the gum at the base of my teeth is starting to die. I go back to sleep until I feel better.

After I get past all the neuropathy and PPE in my feet and hands, bouts of diarrhea, body rash, and the extreme nausea from the chemo and radiation each morning; I crawl into the hot tub and start doing range-of-motion exercises. I then slide into the softest cotton clothes I can find; I can't use any lotions before radiation even on the rash. I also can't style my hair with heat or it will increase the chances of it not growing back, so I settle for wearing a hat. I tape my dry eye shut and then somone drives me the 45 minutes into the city.

Once at the radiation center, I change into the gown in the little cubby with my name on it. I usually don't have to wait too long before it's my turn for the machine. I head through the thick doorway. First thing is to ensure I am aligned PERFECTLY. I lie on the rads table in the "cradle" made especially to my body and am then pinned down (smooshed into foam facial blocks positioned and retained just for me) by a net mask made for me. It is the same kind as we used for Cyberknife, only this time I am face down instead of face up.

Click on any picture to see larger photograph.

Pinned and smooshed face down to hold the head in place for whole-brain radiation (WBR).

Once I'm pinned on that table, I am completely into my role on the radiation team, as are the techs. While they work busily over me making VERY IMPORTANT measurements and markings, I focus on visualizing cancer cells being ablated while healthy cells remain under a wing of protection. The techs' work requires such concentration, and I am so pinned, that I'm just the piece of meat they are working on at that point. The techs use a variety of tools to ensure my proper alignment, and then everyone leaves the room through the 2-ft-thick door and I am alone and waiting.

Ensuring the proper position for WBR and spinal rads.

They all exit the very thick door and leave me alone with the bursts.

The techs retreat to a remote control room on the other side of the building. There are no windows into the room in which I lie; they monitor me and the machinery via camera. Pinned face down as I am, inside the net mask, I really can't see or hear much, but I always know when the machine is getting ready to blast me by the clicks it gives beforehand.

The techs monitor and control the action from a remote control room.

And then I get the first blast, to the brain. The radiation oncologist is giving me a big burst of scattered radiation to the dura of my brain, and it is one heck of a wallop! Although my eyes are closed, I see lightning bolts of greenish blue-white light as the radiation hits the structures of my eyes. It's the same whether my eyes are open are not; I can "see" this energy. (The tech told me it won't matter if I close my eyes or not, because my eyelids can't block the radiation.) It is NOT visible on the camera, and therefore is probably not visible to others if they WERE in the room. But I can very much perceive the radiation energy, and I can smell an ozone smell as the burst of energy vaporizes any dust particles in the air.


The machine repositions for the second blast to the brain. The same thing happens again: lightning in the head and the smell of ozone strong in my nose. I stay focused in a meditative-type state. The techs return to reposition me and the equipment for the whole-spine blasts.

Unlike Cyberknife, the techs must reposition me, turning the table after bursts.

I have no participation while I'm repositioned and the techs again leave. I am almost oblivious to the spinal blasts (two); there is no accompanying lightning in my head and I can't really feel it while the machine is blasting me. Only the buzz of the machine tells me when my spine is being radiated.

After repositioning and blasting the spine twice, the techs finally return and free me from the net mask. HALLELUJAH! does that feel GOOD! I am always so happy. But wait -- it's not quite that easy to get off the table. Because by now, I'm feeling like I've been walloped upside the head pretty durn hard! I'm lightheaded, dizzy, stumbling a bit. Every now and again, it will burn a little on my back from the spinal rads, just like a burn or sunburn.

Afterward, I'm tired and feel a little beat up. And I go to bed knowing I'm going to get up and do it all over again each day for weeks. I just hope I don't wake up puking out of a sound sleep every morning.

STILL GOING!

It's Always An Adventure

Here I Go Again

After getting the disappointing MRI results, I made the rounds of all the relevant doctors (such an awesome team, truly). The radiologist who has been reading my brain MRIs all along is very good, and her opinion is that the enhancement showing *is* active metastasis. The oncologists aren't so sure, but do agree that *if* the enhancement is active metastasis, what we are currently doing is not going to be enough to treat it (in the parenchymal tissues as well as the LM).

So we decided the more prudent thing to do is treat me with the whole brain and spinal radiation that I turned down last July/August (after MRI showed no more active mets in the brain). It's been a flurry of activity as I see all the doctors and get started with the oncological radiation department. I had to be measured and marked and tattooed and pinned facedown with another one of those masks (like Cyberknife used) as we lined me up in a CT and then with the actual radiation equipment. I'll skip over describing for you how torturous some of those appointments became for me!

And then I got the call. Even with our awesome insurance covering much of my costs, I will still need to pay hundreds of dollars each week for my treatment!!! Coming at a time when we are broke, are owed money by others, and got hit with a $860 electric bill followed by a $1500 one; all I can do is trust that God will continue to take care of me financially as well as physically. Clearly, now is NOT the time to make all those trips to Seattle.

Somewhere in the middle of all this activity and stress, DH managed to take a day off from work to spend Valentine's Day with me. Given our bills, we settled for the cheap date that I often am -- and simply took my new dog and went hiking at our local Punchbowl.

Click on any picture to see the larger photograph.

I love that Punchbowl vista!

My girl is coming along so well now that she lies down in the car and rides like a pro. She already walks so well on a leash that she virtually NEVER starts dragging me. And boy, does she LOVE hiking with us! She is so well-behaved when she hikes with us, more mature than I would ever expect a 4-mo-old puppy to be. We love her and are already SO attached!




This was her longest hike to date; we walked at least 1 mi out on the Burkhart Trail, making it from manzanitas to mountain pines before we turned back. I love this walk because it feels a bit like Hansel and Gretel; the manzanita starts off as the bushes to which we are accustomed but quickly becomes large, old, twisted TREES tangling the terrain.







We walked all the way to the first big hairpin in the trail after the junction with the Devil's Chair trail, admiring the transition from high-desert to mountainous plantlife. There was a nice flat spot above the trail at the base of a twin tree; that's where we popped open our picnic and enjoyed the spot. DH smoked roast beast and fresh fish and brought that along with dried fruit and nuts for us to eat. It was delish! Only problem was, we forgot to pack the dog's lunch! So we broke a cardinal rule, and shared ours with her. We did work on enforcing that she couldn't just help herself!

"I can see my house from up here!"

The way we came.

Picnic spot at base of twin tree.

Save more of the trail for another day!

Picnicking on the mountainside.

I felt SO GOOD and the day was so beautiful, blue skies and sunshine and just cool enough that I never had to peel my sweater. The chemo rash stayed Grade 1, and I simply stepped into shade anytime the sunshine started triggering the itching.

First glimpse of Mt. Williamson on the return.

First glimpse of home on the return.

It was so beautiful and I felt so good, that I attempted a little experiment. I ran (about a jogging pace) approximately 150 ft! My feet, although numb, kicked into muscle memory mode after the first few steps, and I was really able to do it! And then I stopped, because the jarring on my spine (and those spinal nerve roots) was OBVIOUS.

A Punchbowl canyon.

But I also wondered if there were any neurological symptoms showing yet, so I tested myself by skipping. Yes, skipping. Like most of us haven't done in over 40 years. And not only did I immediately remember HOW, I could also DO it. So I think I'm doing great, and I do wonder if it is NOT mets that is showing in the brain MRI.

I told her to walk herself while I took a picture, so she did!

We arrived back at the parking lot just as the sun was sinking behind the mountains, just as we had planned. Total trail time was 2.5 hr. All in all, a very nice Valentines day!

MY GIRL!

Speed Bump

Saturday, February 5, 2011

The Long and Winding Road

It's February, and I thought for sure I'd be making my travel plans for Seattle by now. Unfortunately, I hit a speed bump along the way.

I had all my ducks in a row to get into the Seattle clinical trial, and only needed to get an updated MRI to show there are no active spots in the brain. So I went in, excited to finally be at the last step on the admissions checklist. Hakuna Matata, ya know? ROUTINE.

Imagine my surprise when the doctor got the results and it showed what the radiologist believes is active metastasis in a couple (new) locations! Surprise was not the emotion I showed, however. I felt like I'd been kicked.

Well, you know how much I hate bullies, and cancer is just one big bully that I am DONE messing around with; so I have decided to call in the BIG GUNS! I turned down WBR (whole brain radiation) and spinal radiation last August because the spots were all significantly decreased in size or GONE, and there were no active spots in the brain. It just wasn't time for that bullet yet! Well, now it is.

The MRI shows a new growth in the IAC, as well as a spot growing into the outer tissue of the cerebellum and the spinal nerves at C1. I need to get the remaining spots out of the spinal nerve roots as well as these new spots showing in the cerebellum/IAC areas of the brain, and then I will have to wait a few months to get more imaging.

So now I'm thinking Spring probably IS the best time to visit Seattle the most often, since I have to make so many visits (especially in the beginning) once I'm accepted into the trial. So, onward and forward -- at least we have a plan. We've increased my meds back to the level it was at before the PPE (Hand-Foot Syndrome) and other side-effects got so miserable for me. We're also going to increase the intrathecal dose in Mr. Puffy. And in a couple of weeks, I'll start radiation therapy every single day, five days a week, for approximately four or five weeks.

The stereotatic radiosurgery (like Cyberknife and Gamma knife) is not going to be appropriate this time, because once again the leptomeningeal metastasis is seeding in like icing ("zuckerguss") -- and thankfully, so far it is VERY SMALL. So this time seems to be the appropriate time to use that lone field-radiation bullet!

I'm disappointed in the delay, of course; but I've learned to be a patient patient. I still believe I will walk the path all the way to cure. Meanwhile, DH notices I have a little more trouble walking again. I'm fatigued enough that I had to pass on hiking with DLB while he was here to visit, but itching enough to get out there that I can't resist doing "recon."

Today I took a little drive in Big Blue with my posse; the Brown Dirt Cowboy came along in case of trouble. We headed out a truck trail, doing recon for a ridge I want to climb. I found the best place for us to intersect into the trail (the actual trailhead is closed due to arroyo toad habitat), but BDC called me back the instant he saw me start climbing. I'd seen enough; I knew we were in the right place. I'll be back with walking poles and boots! Meanwhile, it made a great little outing for the posse and a nice little drive for us. But oh, am I itching to get out on the trails again!

As usual, click on any photograph to see the larger version.

"Hurry up!"

I'm nearly positive the intersection with the trail is right at the top of this little crest, but the Brown Dirt Cowboy made me turn around!

It was a nice little workout grade, I have to admit!

The view (looking back the way I've come) from where the BDC made me turn around...

The New Button

2011 is THE Year!

So far, I'm off to the right start for 2011. First off, I'm here! And considering the odds of surviving leptomeningeal carcinomatosis, THAT is saying a LOT! It's now been over a year since the LM symptoms first became apparent, and 8 months since I was diagnosed. I have clinically and neurologically improved almost back to where you would never know anything had happened. Even my smile is slowly returning, and I am still hopeful my hearing will be restored.

"Mr. Puffy" prepared for injection.

Second, I have been going every day, all day, for at least a couple of weeks now. It feels good to be functioning again, especially after the long weeks spent recovering from surgery and intrathecal infusions. I felt so good one day that I even climbed a hill behind my house -- DS and I went cross-country up about 500' elevation and back. We had a little picnic as the sun set behind the higher ridge above us.

Resting the legs and checking out how high we've come.

Looking up from our momentary resting spot,
you can't even see where we picnicked!

I started the new year by hiking the Punchbowl with DH and my new girl...the mile loop, that is! I haven't been able to do that since before the brain surgery. I had to wear the kidney belt to help brace my lower spine, but I managed to do the whole climb without too much difficulty. I even enjoyed the deep clay mud, but I was glad I wore my boots! Unfortunately, I misplaced my camera the night before and didn't get to take any pictures. (I've since found where it had slid inbetween sofa sections.)

Third, I am pressing in on trying to get into the clinical trial in Seattle. This is the year my immune system is fixed, once and for all, and we will document it! I only semi-jokingly tell my doctors that if Seattle wants to refuse me on the basis that they don't think I"m stable/healthy enough, I'll outhike them on any Mt. Rainier trail to prove they should let me in!

And the most amazing thing has been happening --- money (donations) started showing up from all different quarters, including those to whom I normally donate! So I think there must be a supernatural plan afoot for me to get to Seattle for the 11 trips it's going to take to participate in the study. Thanks to my friends and the acupuncturist, I'm READY to go!

Since I was asked to add a way for others who don't personally know me to donate, my IT personnel was kind enough to add a new donation button to my blog. Please know that I have been overwhelmed (verklempt!) at all the generosity that has been shown me. I am truly blessed, and I thank you for the blessings you have poured out to me!