Getting out of the hospital is great. But returning to the "normal life" of cancer patient on chemo-break is not as simple as it seems.
Once they removed my tubes last Saturday, so desperate was I to be free of the hospital I couldn't even wait for my parents to get to the room to pick me up. We grabbed our bags, fled to the building and loitered on a picnic bench in the parking lot until Dr. Dad arrived.
As the next few days passed, so glad was I to be back in circulation that found it much harder to carry on "as usual" and transition back into restful-healing mode. (Come to think of it, was I really ever in restful-healing mode before? Probably not.)
I began to understand that, ever since I'd been back home, I'd been very actively resisting any meaningful type of rest. No longer chained to the hospital bed, I couldn't seem to sit or lie still for more time than it took me to drink my morning tea.
I went to a movie, to mini golf, to a minor-league baseball game. I went out to dinner four times and out to lunch twice. I've been to gym every other day, and go to the doctor's office every afternoon for a shot. We do laps around the neighborhood and then I come home and do laps around the house. It occurred to me that I might be trying to outrun cancer.
I felt depressed, and it sucked to admit it. I was supposed to be Choose Life Bowman, weaving the threads of silver linings around me and reveling in the magic miracles that life continued to bestow. But the truth is, sometimes all that ever-present magic can still become heavily obscured. Like the brown smog that settles on the Visalian valley and renders the Sierra Nevada Mountains invisible from view, gloom can settle on a girl with cancer stuck in her parents house in her backwoods hometown.
Visalia was no longer felt like the peaceful abode it once had been. The house—stagnant. The town—dirty and downtrodden. The days—too long.
And so I was not to be at peace, and continued to drive myself crazy, creating errands and activities to keep me busy. The entire time, though, there was a nagging feeling that it is the wrong breed of busy. Like a cat trapped in a bag, I thought to myself—just struggling and flailing and fighting so hard against the one peaceful alternative, which would be to submit. Surrender. Sit down and stop running and relax in your fucking backyard! Take a nap! Anything!
It shouldn't come as a surprise to anyone, and I'm pretty sure I've written about it before, that this has been my biggest challenge for some time now, long before the cancer diagnosis. To learn how to drop all the activities and the productivity and be still and find peace in the stillness. It figures that it would take cancer to force me to learn this, and that I still wouldn't give up the struggling without a fight.
Just one blog ago I had the audacity to wonder aloud what my challenge was, and what my transformation was meant to be. Now here it was, slapping me in the face, and I found myself still trying to resist.
I was pondering this very juxtaposition when a Fed-Ex arrived. There had been an e-mail earlier from Stanford Doctor two weeks earlier about said package—that he had a patient with a very similar case to mine, who had beaten his cancer and wanted to send me the necklace he'd worn during his treatment.
I'd replied that those seem to be the kinds of things in life we should never say no to, and that I'd be happy to receive the necklace. Then I forgot about it. And then, on Wednesday , the Fed-Ex.
Was I literally curled up on my bed in the fetal position when it arrived? Yes, yes I was. Was I completely caught up in the tragedy of everything? Yes, I was. Was my soul quivering with the understanding of the heavy lifting it was going to have to undertake? Again, yes, but now might be a good time to remind ourselves of that Prednisone regimen, and also the Depo-Provera shot they gave me in the hospital to stop my periods (to avoid anemia). While I deeply believe in the spiritual journey this cancer trip is taking me on, I have to say that it is also possible that these drugs are fucking with my brain. The doctors are so intent on saving me from cancer that there is no discussion about the effects of hormonal birth control therapy and my mood, for example. But I know that going from 200mg of steroids a day to 20 is a big leap, and that some types of hormonal birth control methods can directly affect a person's state of mind. So. There is that to consider.
But back to the necklace. It is a clear crystal, wrapped by a thin wire onto a worn leather strap. It has a bit of weight. Along with it came a two-page handwritten letter, from the wife of my doctor's other patient. She told me the stone was found by his father, in the Ruby Mountains of Northeastern Nevada. She said that, as a healing crystal, it absorbs the good and bad energies around us, and releases only the positive energies. She said her husband wore it during his treatment and is now cancer-free. She didn't say how exactly they'd heard about me, only that I would also be a survivor. She also said this:
"There are times you will feel helpless or there is nothing you can do, that was the case with us. Exodus 14:14 says 'The Lord will fight for you, you only need to be still.' So lay back and relax as your body heals and fights this disease away."
It was a good day to receive such a message, and ended up being a turning point of sorts. I've worn the necklace every day since, and it is a constant reminder of that message and source of inspiration for me. I also look forward to the day I can pass it on to someone else.
Annie and I dog-sat this weekend, and, in the recliner of a neighbor I hardly know, I finally found many hours of peaceful stillness in front of the whole first season of Modern Family. I think I may need to have a recliner for myself one day.
Friday, May 20, 2011
Thursday, May 19, 2011
|Fun with Annie's new iPad|
As for the chemo itself, I intentionally ignore the bright green biohazard sticker on the bag and try not to dwell on the reality of what it is—liters and liters of absurdly toxic bright-orange chemicals saturating my entire body over a four-day span.
I mean, it's obviously what I'm here for. I'm not sick in any other way, I'm not in any pain, so my sole mission here is really just to entertain myself while it drip-drip-drips its' way in. But in terms of healing, I just have to think of it as a necessary measure to becoming un-cancered. It also helps to stage the chemo-environment with some undersea creatures (see photo).
|Lobster Puppet sent by Ken Bowman,|
Jellyfish crocheted by Amanda-Jean Ward
I also brought in quite the load of other items that seem to boost the Essence-of-Kia in this small, bland, dark little space. Photos of myself in stronger moments, photos of friends I wish to keep the closest, a giant poster with a drawing of a screw with the word CANCER in bold red type beneath it, the quilt Annie's mom gave us for Christmas, my own pillow with the butterfly pillowcase, and of course, Annie (see photo below).
Basically the only real obstacle this time around has been my neighbor to the left. We call him Jerry. Jerry screams in pain, he begs to die, he moans and hollers at all times of day and night. When we try to politely inquire to the hospital staff if he's ok, they all kind of roll their eyes and say that the people who put on these kinds of theatrics are usually the ones furthest from actual death. It's still a bit unsettling, to say the least. I don't mean to be all sassy-bitchy about other people's suffering...I just wish someone would give the man something to make him sleep it off! Then I could get on with my ignoring I'm in a hospital and continue pretending I'm just traveling below decks on a really tiny boat.
Here she is in my view from the bed.
Another major boost to my energies has been the "special" cookies I smuggled in with me—though it's not really smuggling if nobody cares, which I'm pretty sure nobody does—made by the loving and generous hands of two very special sets of friends. They boost my appetite incredibly, helping me to eat right through the chemo, which was very difficult the last time. Also, I have to say they just make the days funnier and generally more pleasant. I feel really grateful to have received them in time for this hospital stay. Probably the best medicine I'm getting in here. Viva los edibles!
|Speaking of appetite—|
my last meal before the hospital. Yum yum!
Every time I peer into Facebook, I am slapped in the face by all the fun things my friends are doing that I am not currently able to enjoy. Vacations to Mexico, outdoor cocktails, bike rides in the spring greenery, you name it, I'm not doing it. Can't do it. For several more months at least.
But, every so often I'll see someone buckling under some kind of stress or responsibility that I'm also not having to deal with at the moment, that used to weigh so heavily on me before. Washing dishes. Sweeping up dog hair. Trying to keep myself fed every day on an incredibly tight budget. Going to the laundromat. Washing more dishes. Changing the oil in my car. All those un-sexy, un-fun adult responsibilities that I carped about so often are completely swept under the rug right now as I continue to just be a Cancer Patient. And, in some way, I'm lucky to have a break from all that. Who wouldn't enjoy the chance, on some level, to be free of all their usual responsibilities, for several months on end?
Of course, the conclusion I'm coming to about all those pesky adult responsibilities is that they are totally worth the fun-time, spring-time, summer-time, time-off activities you get to do alongside them, generally whenever you please. All that dog-hair, laundry, dishwashing bullshit is the price we pay for those ultimate freedoms. Don't take them for granted. Go ride your bike!
|Taken at the Sequoia Mall,|
Saturday, May 14
I've found it to be tremendously relevant and meaningful as I go through this. The main nugget is to use challenging times —big or small—to expand yourself into a more soulful, conscious person. To be able to be the phoenix rising from the ashes of your own personal tragedies, whatever they may be. I'm loving her voice, her own story, and the stories from other people that she shares.
It just makes me wonder: how to put that into practice myself, in the midst of my own so-called tragedy? What am I holding on to that I can now let go of in the ashes of this Cancer fiasco? Who is that person around the corner that I'm just waiting to become? And how on earth do I make that actual transformation? I feel so on the brink of that blossoming.
Saturday, May 14, 2011
If my cancer journey is like Lord of the Rings—or any epic movie, really, where many battles are waged—then this past week has been that tranquil time between battle sequences when the sun comes back out, the heroes shower off the filth and grime of war, and small bits of merriment occur.
The pendulum did seem to have swung in the direction of the awful there for a while. That first week out of the hospital was largely characterized by stress and discomfort. The stress part I covered in the last post, I believe, but the discomfort of the chemo I had tried not to mention.
However, now that I'm not currently suffering, it seems worth describing.
It did end up making me feel pretty miserable, but not in the way I expected. It's not a I'm running to the toilet every 10 minutes with the stomach flu kind of sick, as much as an all these extremely uncomfortable things are happening in my body at once kind of sick. So much for the "feeling bad because of chemo is a self-fulfilling prophecy," idea.
One of the worst side effects was developing Thrush, an oral yeast infection that occurs most often in babies but apparently also can happen as a result of taking lots of steroids. You get white patches all over your mouth, tongue and throat that not only look nasty but feel like the open sores that they are. It makes chewing and swallowing a cruel and unusual punishment.
Then there was also the fatigue, both extremes of the bowel spectrum, nausea, bone pain and rigid muscles in my back that made me squirm and flail like an upside-down beetle whenever I laid in bed to go to sleep. Overall, a layered combination of unpleasantness from which there was no escape but time.
Luckily the time passed pretty fast, relatively speaking. By the beginning of this week, most of my side effects had dissipated. On Tuesday, I was mostly just coasting on fumes of emotional exhaustion when we got a call from my Stanford Doctor, letting us know that their lab actually hadn't run one of the Very Important Blood Tests they needed, and could I please come back so they could get another blood sample?
The news almost broke me (and Annie) when we first heard it delivered from Barb's anxious lips. Another harried trip to Stanford, full parental panic signals blaring, this time under the disturbing auspices that the professionals there failed to do the job right the first time? Nooooooo!!!!! Say it aint so!!!!
Yet fate decided to pee down a little golden shower of good luck upon us that day. Nicholas Benitez—one of my best friends since High School—happened to be standing in the kitchen when we got the news and volunteered to drive us himself. God bless you Nicholas, and the Nissan Cube you rode in on!
This trip to Stanford was terrific. Annie, Nick, Kia, and the Cube proved to be a recipe for travel success. Relying only on our iPhones to guide us, with Hotel Zico on El Camino Real as our home base, we navigated to and from downtown and the Cancer Center with ease. We watched basketball in a bar and ate pizza by the slice. We ate snickers bars in bed in our hotel room while watching back to back episodes of HGTV. We spent less than 45 minutes in the Cancer Center the whole time. Having it feel more like a roadtrip than a Cancer Mission was far and away the greatest thing. A glorious and necessary break from everything that had come before.
A couple things about the second trip to Stanford:
When I arrived there, back at the lab, they still didn't have the right test ordered for me. Luckily I had the presence of mind to ask the woman as I was checking in what tests had been ordered in the first place. She read back the most common test, the very same blood test I get done on a weekly basis in my local doctor's office.
"No Flow-Cytometry?" I asked, shocked that I'd driven four hours the day before and they still weren't about to get the right test.
"No," she said, smiling up at me, "Just the CBC. I'll have to call and check about that."
So much for the idea that the Stanford Cancer Center, with all of it's polished interior decor and live harpists strumming in the hallways, can't fuck things up just as bad as a small-town cancer clinic.
I called my doctor on his cell phone and cranked up the indignation in my voice—or imagined I did, anyway—as I let him know that there I was, standing in his lab, and they were about to give me the wrong test. Again.
He reacted with appropriate concern and rushed off the phone to fix the error. I know he must have given the lab staff a verbal bitch-slapping, because they all got real peevish with me from there on out, as if it was my fault somebody got called out on not doing their job right. Whatever. They took my blood, I made sure it was going to the right place, and I was Out. Of. There. In enough time to still get free parking, too!
Now, before we all get carried away on a silly wave of hate and frustration, let's just focus on the good news: that second set of test results I went all the way back for came back very positive, which is to say, no cancer cells were shown lurking around in my blood. None at all! This confirmed what the miserable PET scan had also indicated. That the cancer levels left in my body are so low, they're not even showing up on most tests!
Of course, this doesn't mean I'm cured yet. We know from the diagnosis and the past behavior of the cancer—mainly, it surging back after that first wee round of chemo—that it is an agressive lymphoma. So even though there aren't hordes of these cells swirling around throughout my body anymore, all it takes is one or two to be left behind and sooner or later they'd regain numbers and take back over. Still, it's a great comfort to know that the treatment is working as intended. That my spleen and liver are still the size they ought to be. That things are, for the moment, going well.
This is just the sort of necessary inspiration I need, as I'm set to go back into the hospital for more chemo on Monday. It would be absurd to say that I'm looking forward to it, but there is a part of me—the part that's feeling better, obviously—rallying up a bring it on attitude. I survived the last round, and it fried the shit out of all that cancer. I handled it once, and I can handle it again. It looks like they won't be increasing the dosage yet (there's still 4 more rounds after this, and I'm told it will get stronger) so I pretty much know what's coming.
I'm also banking on the fact that I'll be going into the hospital for a 5-day chemo course with sound mind and body. I fully believe having my wits about me at the beginning will improve my experience this time around. The whole calcium-dementia scene was so disconcerting and alarming, I think it carried into the overwhelming confusion I felt during that whole round of treatment. This time, I feel prepared.
Annie and I also prepped by writing down a list of goals to keep me sane while in the hospital. They include helpful ideas like showering at least three times that week, getting dressed every morning, and leaving the room once a day. It's all about the routine.
And again, before I get swallowed up by another Chemo Trip and whatever is to come from that, I wish to send love and gratitude back to the people everywhere who are supporting me and my family through this crazy journey. I have received so many funny, thoughtful and precious words and tokens from a circle that is wider than I ever knew, and seems to keep subtly expanding. I was striving for hand-written thank you notes, but am finding that I can't even keep up with the flow of letters, toys, crossword puzzles, crazy hats, and everything else people have sent to show their support. I am so blessed to have every one of you in my life, and to be on the receiving end of all this goodness.
Wednesday, May 4, 2011
The Glory Days
They let me out a week ago (Saturday) an hour after the last bag of chemo squeezed out its final drop.
The first thing we did was sit in a patch of fading sun in the front yard. I squinted into the slanty light and felt reborn. Just to be outside, feeling the breeze on my bald nubbin-head, watching the tree branches waving slowly at me—it was miraculous.
We tried to make the most of my good spirits and relatively good health by piling into the car for a "quick" drive to Yosemite the day after my release (see photo). I desired to see some mountains and meadows, and wanted to try to tap into some nature. Mostly we just gazed out the windows and admired. At one point we stopped by a stream in the middle of the Valley. I crouched down beside the water and looked at the sparkling light and felt utterly dazzled. I also felt a very deep longing to just climb aboard a floaty raft and drift into the middle of that twinkly river and float around forever. I realized that's one of my favorite things to do in life: drift around on floaty rafts on warm summer days. When this is over, I have a lot of floating to do.
But what about that Cancer Situation?
When I left the hospital, things were very much up in the air. It seemed to my doctor that the initial dose of chemo I received on April 1 hadn't been strong enough, and that the final week before I was hospitalized, everything came rushing back. Mega-spleen blew up again, my platelet levels went down, and essentially the cancer proved itself to be far more aggressive than everyone had anticipated.
While I was in the hospital, my doc in Visalia began consulting with another doctor at Stanford's Cancer Center, who advised him to treat me with the much-more-intensive 96-hour chemotherapy regimen that I received. It was also established that after my release, I'd drive up to Stanford to have a consultation with this Other Doctor, to discuss the rest of my treatment and the potentiality of a stem cell transplant.
Essentially, by the time I was out it seemed clear to everybody that this wasn't going to be quite as easy as we all thought in the beginning. I wouldn't just be stopping by the cancer center every third tuesday to chill in a recliner, have Anna With the Magic Hands pet my arm and get a six-hour-chemo drip while my cancer faded away. But - what would it be? It seemed we'd have to wait to get to Stanford to find out.
My appointment at Stanford was originally scheduled for May 13. On Tuesday, the Stanford People called to see if we could come earlier instead and see the doctor Friday, May 6. Under normal circumstances, this would be great news. Hey, come up early! Get that consultation done and get on with things! Woohoo!
But I don't live under normal circumstances. I have cancer and I live with two hypervigilant obsessive medical parents of which I am the only offspring. The news that our visit to Stanford was bumped up a week brought about a heavy flow of what I can only describe as panic.
The appointment was now mere days away. Would we be able to find a place to stay in time? Where would it be? How would we find our way there? How would we find our way from the hotel to the doctor's office? Would my doctor here be able to transfer my medical records in time? Would there be time to order and perform that full-body PET scan they recommended we bring? All these questions caused my parents no end of extreme fretting, visible stress and highly vocalized worry.
To me and Annie, it seemed like the whole thing could be easily handled with a car, a backpack and 10 minutes on Google. But we are not in charge, my friends, we are not in charge.
Even once the travel arrangements were taken care of, one large obstacle remained. I still needed to get a PET scan. (During a PET scan, your body is injected with Radioactive Sugar. You are then laid on a slab and rolled back and forth through yet another futuristic donut, while the cancers in your body pick up the sugar and glow under the light, or some such thing.)
It always starts badly when you can't eat or drink for 12 hours. Another bad sign was that the PET scan occurs in a trailer. Yes, like a mobile home. (Apparently the equipment is so expensive that most hospitals can't afford to own it themselves. So the machine lives in a trailer and travels between different hospitals and clinics so the benefits can be shared far and wide. Whee.) The third bad factor is that I couldn't get one scheduled until Thursday, the day we were meant to leave for Stanford. So the whole thing had to squeak by in the morning and then get processed quickly enough that we could pick up the results CD on the way out of town.
PET Scan Hell
The whole thing was a nightmare. I spent 30 minutes sitting on the curb outside the truck—empty of all food, beverages, medication or painkillers—before my mom knocked on the window and we were told we had to register inside the building first. As we registered, it came out that they weren't intending to do a full-body scan as ordered. My dad had to be called to remedy this, which set into motion a whole other crazy sequence of events I'll describe next.
At that point I was so frustrated and uncomfortable I was crying and begging to just blow off the test. My mom told me no.
The tech eventually arrived and brought me into the trailer, where it was freezing and they were blasting smooth jazz. I cannot bear smooth jazz. Literally that music makes me angry in a place that no music should be able to touch. And yet it blasted while I seethed. They sat me in a recliner, put the radioactive sugar in my veins and told me I had to wait an hour for it to circulate before they ccould do the test. What did I hate even more than the smooth jazz they were torturing me with? The miserable woman that was in charge of me. She had allergies, she told me, so bad she had to take 3 different kinds of allergy medicine that morning! I'm lucky she doesn't trip all over herself and fall down right in this little trailer! She keeps saying stuff like that, and stumbling all over herself in her ugly orthopedic sneakers, and I marveled that she's allowed to keep her job.
Many, many smooth jazz hits later the hour ended and they got me on the slab. They rolled me up in blankets and strapped my legs down. Then, instead of whizzing me back and forth and out like the CT scan, I was left there to scoot, inch by inch, for forty minutes more.
Dr. Dad Freaks Out
By the time I staggered out of the PET scan, I was worn down and battle-weary. I wanted nothing more than to go home, gobble handfuls of medicine, get put in the car and roll on toward Stanford.
But Annie and Barb were waiting for me outside, and the expressions on their faces were anything but roadtrip-carefree.
What, I wondered, could possibly have happened in the 2+hours I was trapped inside that torture truck?
What had happened is that Dr. Dad had in fact been admitted to the Emergency Room. When we called to tell him they weren't planning to do a full body PET, his anger/blood pressure/panic levels started to rise. He arrived at his office just at that moment, whereupon his nurse pointed out that he had mysteriously developed a black eye. He thought he was having an a stroke—which is how his dad died—which made him start to panic even more. He got dizzy and laid down on the floor of his office. His nurse put him in a wheelchair and pushed him to the emergency room. They immediately started running CT scans on him. His life flashed before his eyes. (Or, more accurately, my life flashed before his eyes, because he says the whole time this was happening to him all he could think about was how he had to get me to Stanford in time for the consultation.) His tests came back normal. He had had a full-blown anxiety attack. He came home, took one of my Ativan, and collapsed on the couch. Barb ended up driving us to Stanford.
The Stanford Doctors were very thorough, and though the experience of physically getting to them was fatiguing, bewildering and emotionally exhausting, it was well worth it to have seen them.
Ultimately, it's a good thing they ordered and that I survived the PET scan, because it came back "cold." This means that no cancer cells are currently lighting up in my body. This means the second round of chemo totally kicked it's ass! And so there was no emergency admission to Stanford Medical Center, no manic rush to extract my spleen, no more drama of the medical kind.
They simply recommended that I stay the course I'm now on. Which is 96 hours (five days straight) of incredibly strong, toxic chemotherapy, with dosage increasing by 20% each time. This will occur five more times, with three weeks of recovery in between. At that point, they will assess exactly how gone the cancer is. The stem cell transplant will be a possibility then, I think, if they're not satisfied with the level of remission. But they also said that many times stem cell transplants are saved as measure to be performed only in the case of future relapse, like if it were to come back in a few years. And that at that point it usually takes care of the cancer for good.
There are still things to be careful of in the meantime - there are still some points during the post-chemo cycle in which it really is necessary for me to be Bubble Boy. And the Stanford docs asked me to change around a lot of my non-chemo medicines because they were afraid I was getting liver toxicity. But now I have a new team of doctors collaborating with my local one, and everyone is happy to be working together. Now we can all just try to relax.