Tuesday, March 26, 2013

Light as a Feather

When at its peak, my pain can be blinding and completely arresting. Toradol, a high-dose Aleve-type drug, has been the only thing that holds it back, some, and even then my pain remains at a 5 on the scale. When each dose wears off, it comes roaring back in at an 11 or 12, waking me up at night.

The pain is still stemming from this one very pinpointed spot on my left shoulder blade sending daggers out in every direction from its center point.  Its prevalence has forced us to have to shift treatment gears. The pain is too great for me to risk going onto a clinical trial of another novel therapy that may not do anything. If it truly is the cancer causing this pain, it's only going to get worse if we can't stop the growth. 

Despite how difficult it will likely be on my body, we need to tap back into traditional chemotherapy in hopes that it will be just as difficult on the lymphoma and be able to shrink things down again. Right now, it’s more important for me to be on the Prednisone to help soften some of the pain by reducing some of the inflammation rather than tapering off of it to try to get on a trial with very little data behind it. I guess this is the emergency plan, which leaves me real unsettled.

I’ll still have a lymph node biopsied on Thursday. If that shows something other than HL, then obviously everything will change. I am holding out hope that it did morph into something else, as long as it’s something that is highly treatable/curable because that would open up a whole new medicine cabinet. I’m deathly afraid that it could reveal itself as a deadly, incurable cancer, one of those ones that was threatened to me on all of those Informed Consent packets I’ve signed that detail how chemotherapy drugs can leave you at risk for future cancers.

If it is still HL, as most everyone suspects, then I’m likely going to go onto two oral chemotherapy drugs – two that I was on last April as well. I did not handle them well then. I’m not sure what’s going to happen this time around. I’m polling around to my other doctors as well, but I know that my options are very few.

There have been some rough nights, and as I said, the pain can be so blinding that I feel desperation to do anything to make it stop. Last night, from the quiet of our bed I put it out there to the universe that I needed some kind of sign to let me know that it was worth going through this. Through tears, in a whisper, I asked for some kind of tangible sign that if I pushed through and endured this difficult time, let the harsh chemo do what it had to do, that it would be worth it. I wanted to know that if I continued to move forward that it would all be so worth it in the end.

This morning I woke up with The Beatles song “Blackbird” playing over and over in my head. It’s one of my absolute favorite songs. I think the melody is so innocent and beautiful and I love the idea of taking broken wings and learning to fly, as I feel that’s so much a metaphor for much of what I’ve been through: constantly adapting and relearning. It makes me believe that my moment to be free will still arrive.

Earlier this week my mother had brought over a beautiful porcelain box of her mother’s (my grandmother’s) jewelry. This afternoon I cut the tape that secured its top and dug through some beautiful chains and rings and fun earrings. My Gramma loved jewelry, dressing up, makeup, perfume, all the girly things in life. At the bottom was a gold pin in the shape of a feather. I held it in my hand and burst into tears immediately knowing that that was the sign I had asked for.

Feathers have been a very important symbol to me since my allo transplant, because though damaged, I felt that the experience gave me a new set of feathered wings with which to learn to fly again. I am still learning. Sometimes the wings are very heavy, but when they are light, all is beautiful. I love how delicate feathers are and how they symbolize flight ­– the ultimate freedom, lifting high above the pain and the fear.

See more of Kara's work at versejewelry.com
I wear a charm necklace that has three engraved circles on it, which a jeweler in New York City crafted for me at an outdoor market. I watched her tap each letter into the soft silver. One reads “peace;” one reads “strength;” and the third reads “life.” For a year I wore only two on the chain – peace and strength, the two words that I would always go to to get me through the tough times, drawing on my inner strength and striving to find peace in my body, my head, my life. I wore them on a thick silver chain, a long one that allowed the charms to fall at my heart, all through the allo transplant process. It wasn’t until I got through the first anniversary of my transplant that I removed the third circle from the box and added “life” to my necklace. It was then that it felt right. I had had a matching necklace with just a single small circle that reads “life” made, which I gave to my sister on the day her stem cells were infused into my body as a reminder to us both that she gave me a second chance at life.

I talk about my necklace because when I asked my very talented, very dear childhood friend who is a jewelry designer to add the “life” charm, I also asked her to add the sterling silver feather pendant that she often works with as I’m so drawn to feathers. She also added a faceted crystal quartz briolette and sent me all the information on the many things it symbolizes, including: “A power place from where the magic of the human mind can launch its dream creations into the universal machine so they can become a reality.” We both liked that one.

If one day I’m ever cleared to be able to, I’d love to get a tattoo of a feather on my inner left arm as a reminder of what I’ve risen above and that I still have wings to fly.

So, yes, seeing that gold feather pin was a reminder of all of that and more. My mom said that when she saw the feather in my Gramma's jewelry box, she was surprised to see it there and knew it should go to me as she divvied up the jewelry she left between my sister and me. I have no doubt that that was the sign that I was asking for. This time it was my Gram who answered. My Gram who we lost two years ago, also to cancer, while I was in the thick of my transplant recovery. Still too immuno-compromised and weak for travel, confined to New York City, I was unable to attend her funeral. I miss her all the time and this little sign that she sent helps me to know that she’s still looking out for me.

I’ve only once before asked for a sign. It was when I had to fly back to Houston for a PET Scan to see if the clinical trial I had been participating in had worked and if it would finally be time for transplant. I remember falling to my knees crying and saying that I needed something to give me the strength to get myself to Texas and be able to absorb whatever news I would get there. The morning of my flight I awoke to a tall bloom of a white peace lily poking out of a houseplant in our living room – a houseplant that hadn’t flowered in years. In fact, the plant was mailed to me by a friend to cheer me up when my paternal grandfather, my Peppe, had died in 2008. Well, there it was clear as day. That time it was my Peppe answering my call for a sign – in the form of a sudden six-inch stem and full white lily bloom jetting out over the plant that was otherwise only green leaves.

I had no question then and no question now. Those that we love never fully leave us. It’s true that they live within us and are there to guide us. I’d rather I could have them back so that I could hug them and listen to them in person, but it brings me some peace to know that their presence is still alive.

Tell me I’m a little woo-woo, a little out there. Tell me the ‘roids have gone to my head. Tell me the lack of sleep has me fixing delusions. Maybe it’s all partially true, but I’ve always been a dreamer, a creative, a lover of signs and symbols, kismet and simpatico. Seeing that feather brought back some semblance of hope just when my own fighting flame was starting to burn out. 

Thursday, March 21, 2013

Phasing out the 'Roids

Today's Starbucks nest. 
Thursday also starts with a “T” meaning that it qualifies as a Tuesday blog post, right? Really, I am trying to get back on the Tuesday/Friday posting wagon because it’s good for me and – I imagine in my head – good for readers to be able to anticipate when posts will be up. [Is it? I’d love to hear from you in the comments.] Today’s blog will serve as a Tuesday/Friday hybrid post: Tuefday.

Ultimately, I didn’t get to writing this week because I am so damn tired and most of my energy has been devoted to laying plans for next treatment steps – with a haircut, pedicure, Hartford dinner date with Craig, and a lady’s movie and lunch date thrown in there (it’s not all medical mayhem). I am tapering off of the 10mg of Prednisone that I’ve been on for months and which has been my little comfort dose. I am now taking it every other day. Today is a no steroid day. I’m trying to replace it with green juices and smoothies and shots of apple cider vinegar and it’s helping a little with the transition. I’m supposed to be doing all of this every day anyway as prescribed by my naturopath, but I’ve fallen off of that wagon lately, too. I’m transitioning better than I have in the past, but it’s still not easy. However, if I can do this, then it opens up more clinical trials, so I will make it happen.

I’m tired for a variety of reasons:

I’m still pushing past that lingering pneumonia. It’s much less, but I’m still coughing and my nose has been running incessantly from a lingering cold. I carry wadded up tissues in my fist like my Nonna used to do. She’d tuck them in her shirtsleeve so they’d always be at hand. It’s helpful because I never know when the faucet will open. 

Nighttime sleep has been a joke – still – even after being home in my own bed. I have bad nightmares and I talk in my sleep a lot so I’ll wake up sitting up in some weird position and will have to basically slap myself to make me realize that the dreams aren’t real. I’ve also been sweating again: both as an effect of the floundering steroid hormone levels and probably the disease itself. Last night I woke up in the middle of a sweat and actually witnessed the sweat beads popping out of my skin, all over, until my legs were slick with salty water and my tank top was misshapen and heavy, a huge ring of visible wetness on it from my neck to my bellybutton. As much as Craig urged me to, I was just too tired to get out of bed, dry off and change, so I fell back to sleep chilled and smelly.

Sweats don't just happen at night either. In fact, I just had one right here. That fireplace next to me suddenly feels like the fires of hell. All of the sudden I'll break into crazy hot flashes and have to strip down to as little clothes as possible. My forehead will bead up and it'll suddenly become hard to breathe. This happens from the hormone up and downs, from the disease, and probably from early menopause, though I'm in full denial surrounding dealing with that. Oh, and P.S. My left boob is still completely numb and aches most all the time. 

The disease is on the rise and my body is in high alert mode. It’s a different tired than when I’m on chemotherapy, which is more drug induced. This is more of a natural tired feeling. It’s actually preferable because when I do fall asleep – which happens best during mid-day naps – I fall asleep quickly and into a very deep sleep. This kind of tired is felt deep in my bones and in every organ. I get to a point each day when that’s. just. all. i’ve. got. No mas. It’s like watching a computer shut down. It goes through each of the open programs and closes them in succession and the screen slowly fades. My body will get tired, then my eyes will get heavy, then my words start to slur. However, with me, no one asks if “I’m sure I’d like to shut down now”. Something greater than me is in control of the power button.

Muscle and bone aches are another prominent feature of the steroid wean. My quads feel like jello and my back muscles are sucked onto the bones as tight as Saran wrap. Without the Prednisone, the awful pain is also revisiting me in my left shoulder blade. The same pain that popped up while I was in San Francisco. The steroid must have been keeping the inflammation surrounding it at bay. It’s one little, very pinpointed spot that has the power to send these electrical flares of pain through my entire body. When it’s really throbbing, which mostly happens in the middle of the night and wakes me up, I feel like I took a bullet there and the pain is reverberating from the impact. I’ve tried Icy Hot on it, I’ve tried massaging it, I’ve tried ice packs, and mostly, like they teach in yoga, I just breathe into that sucker with the utmost focus because it’s all I can do. Oh, and I’m still on the pain patch. It doesn’t touch that kind of pain though. In fact, two Aleve are what seem to be the best for it. They at least take the edge off.

Focus has also faded. Hence, lack of blog posts. It is so much work for me to get out of the house. I am at Starbucks now, but I didn’t leave the house until noon. It’s hard for me to get out of bed, if not for Sammy Dog clicking her little feet by my bedside doing the gotta-pee dance. It’s then hard for me to get out of the shower because it’s so warm and the idea of putting clothes on and making myself presentable is so daunting. Then, I make an elaborate production of morning breakfast and e-mail, Facebook checking. Gotta make an oatmeal with nuts and seeds and fruits, green tea and a lemon water and a green smoothie and get fully caught up on correspondence and take my pills before I go anywhere. Mostly, it’s because I’m too tired to get up off the chair.  Then – shit! – it’s 11:30 a.m.

In order for me to leave the house for some reason I have to prepare like it’s the Apocalypse. It takes me a while to pack everything that I might want to work on, enough things to drink, a snack pack (highly important!), Purell, tissues, as-needed meds, notebooks, red pens, charging cords, sneakers – in case I’ll go for a walk along the trail behind Starbucks, and yoga mat – in case I’ll do a drop-in gentle class at the studio one plaza over. I even do this in my own home. I create a little nest of things I might need all around me. It’s weird and I think a habit I carried over from transplant days when I’d need things at the ready and wouldn’t have the strength to necessarily get to them.

Then, I finally get to Starbucks and they rearranged all the tables in a weird configuration that almost sent me into a panic attack. My usual spot has been replaced with three resting chairs and a little side table. The other tables are right on top of each other and broken into twosomes. What the freak? It’s like my brain is so used to handling the super, super big things in life all the time with relative ease that the easy things can really throw me for a loop. 

Tell me there’s new spots of cancer filling up my lymph nodes and I’ll digest the news no problem. Let's move forward and find a way to fix it. Hide my eos lip gloss egg on me and I can literally break into a panic. I like to blame these tendencies on the steroid taper and insomnia, which I like to blame everything on. A positive is that I’ve been much more receptive to just enjoying things, relaxing, going for impromptu outings and am looking forward to a fun weekend with friends and a dinner party planned. I’m too tired to feel guilty for not being productive and have had a big mind shift lately in realizing that just “chillin” – as my younger brother and sister always call it – is productive too, just in another way. My head and body certainly do need to “chill.”

Family, friends, doctors, and cancer confidants were in agreement with my gut on the biopsy question. I’m going in next Thursday to see the Hartford Hospital surgeon who performed my first two lymph node biopsies from my underarm. He’s very kind and very skilled. I am so fortunate that my Columbia team had no problem with me getting the procedure done locally, completely understanding the extra stresses that eliminates. I’ll be comfortable in familiar territory and close to home. They’ll be able to analyze the tissue directly as well, so it doesn’t really matter who it is cutting it out.

Thursday will be an assessment of the nodes he could go after and potentially could be the biopsy itself if he determines it’s something he could do right there in his office. Otherwise, we’ll set up another appointment in an outpatient facility. I’m hoping for the former, but am up for whatever it takes. What’s another scar and surgical recovery at this point? Treatment is halted until we get these results.  

[Sidebar]: I reworked, sliced and diced my recent blog post "The Semantics of Cancer" to meet submission requirements, and it was published on The Huffington Post. Check it out here. If you like it, please give it a Facebook thumbs up, share, or tweet it out to your personal social media worlds. You can also "like" me as a HuffPo contributor and get updates anytime I'm featured there. Thanks for following! 

Friday, March 15, 2013

Mixed Results

No better way to start the day!

My late friend Steve (ugh, “late” sounds so formal and awkward). Try again: My very good friend, Steve, that died from complications from this f’in disease and that I miss tremendously every day, once told me that at some point, news just becomes news.

News is what I got yesterday after having my first PET Scan to assess the effectiveness of this Bendamustine/Brentuximab Vedotin clinical trial. It’s not necessarily really good. It’s not necessarily really bad. It’s just news that I now have to deal with. This news directly affects my life, so I kind of have to pay attention, as little as I want to pick up and recalculate.

I am coming off of this trial. It is not working for me. Another treatment that just couldn’t get the job done. It’s getting frustrating and exhausting for sure. I desperately miss stability.

Wednesday was a long, long day. My mom started at 5 a.m., driving to pick me up at 6:45 a.m. to start the trek into the city. That’s a devoted mama. I had to have my scan at the hospital way uptown in the Bronx. It’s very old hat, but it’s still not fun. I had to get both a PET and a CT Scan to be able to best analyze both my bones and my lymph nodes, respectively. That means I had to lay in two machines, drink a full bottle of “banana smoothie”-flavored barium sulfate, be injected with the PET Scan radioactive diodes, and then be injected with contrast for the CT Scan, which goes in while you’re in the machine and makes your whole body so hot that you feel as if you’ve wet your pants. This is all after not eating since a midnight snack the night before.

We then had to travel to midtown Manhattan where my doctor’s clinic is and we would go over the results and formulate a plan. Waiting for those types of appointments to start, especially, is hell. Waiting for 2.5 hours is even hotter hell.

Wednesday, March 13, 2013

Is It Just Semantics?

Lives come in every shape and color and that's
what makes them beautiful. 
I was talking with someone in the grocery store parking lot that I’ve never met, but who knew of my nearly four years of living with cancer, and said he admired me because I keep going. He told me that his brother “gave up.” The comment really irked me. Gave up? What does that even mean? Who are we to judge other’s decisions on what treatments they do or do not want to pursue? Or how they react to their diagnosis and choose to manage their own, very personal body and disease?

We all have the right to set up what is a desirable way to live our lives in the way that works best for us – with or without disease – as long as it is respectful of those among us. Our life choices should not be dictated by societal pressures or judged by anyone – even ourselves. We cancer patients have enough pressure: don’t put us on pedestals or act like we’re your project to “fix.” We’re just regular people doing what we have to do to get through the tough times and relish the good ones. Let us choose our own path to follow. Sure, guidance and love and support are so much appreciated, but judgment, unsolicited questioning and force are not.

Just because you have an aunt that survived breast cancer seemingly effortlessly does not mean that the road will necessarily be as easy for your colleague, so don’t equate their journeys. Just because your college roommate died of multiple myeloma doesn’t mean that others won’t live a long life of remission. It’s just not that cut and dry.

Friday, March 8, 2013

Breathing Once Again

Taking in the majesty of the Pacific.

I realize I’ve been missing from the blog world for a while, but to write, I need time, energy and focus and I have not had an ounce of any of those for the past two weeks. But I've gotten those things back and the stories of what I've been up to will follow. 

Though I've been remiss of those things, what I did have was a bout with pneumonia, a pleural effusion that made it very hard to breathe, a week straight of very high temperatures, soaking night sweats, and teeth chattering chills, several bags of blood, and another round of chemotherapy thrown in. I spent an overnight at Columbia Presbyterian in the Bronx and then another five-night hospital stint at Hartford Hospital home in Connecticut after making an Emergency Room entrance. I also had some life-affirming experiences at the San Francisco Writer’s Conference and a fantastic time exploring the City by the Bay and the California Coast.

Yesterday was the first day I was home since I left for Cali on Feb 13. After a week of vacation, Craig and I separated and I took a red eye right to NYC to clinic where my mom met me and my medical team could examine me and infuse my next treatment immediately in case this was Hodgkin gone wild. Today was the first day that I’ve felt like I’m on the other side of all of these infections. It feels good. But it has not been an easy go. These weeks have taken a real tough toll. We didn’t know what was going on for a while there, and that is a scary feeling. After much examination, imaging, blood tests, heart tests, monitoring and IV antibiotics all over the place, it was ultimately determined that I had a community acquired pneumonia in my left lung (damn sick people on planes) and developed a lot of fluid in the lining around that same lung which grew as an inflammatory and protective measure.