Thursday, March 24, 2011


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!


Wednesday, March 23, 2011

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.

Monday, March 14, 2011

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!

Saturday, March 12, 2011

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!

Tuesday, March 8, 2011

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

Saturday, March 5, 2011


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!

Wednesday, March 2, 2011

Another Tour


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.