Monday, February 27, 2012


What do you do when you're feeling tapped out of strength? Are there any particular things, places, movies, quotes, activities, rituals ... anything that you do to motivate yourself to keep going through a tough time? Where do you find motivation? What helps you to not give up?

I'm collecting these for a possible future project. And, selfishly, I could use a little boost right now. If you have something to share, please post a comment. I appreciate your suggestions and advice as I continue to push through and up the next set of peaks.

Thursday, February 16, 2012

Vials of Love

Below is the text of a piece that I had the honor of sharing last night as part of "Syllable: A Reading Series" at La Paloma Sabanera coffee house in Hartford, Conn. Reading such a personal piece – out loud – to an audience of fellow writers and lovers of literature was both terrifying and comforting. I thoroughly enjoyed listening to the varied works of the nine other writers who put together poems, song lyrics, fiction, and nonfiction – all set to the theme of love. What a wonderfully talented group of people and a fantastic platform for writers. I was so happy to have been given the opportunity to take part. 

"Vials of Love"

I love a woman whose name I don’t remember. In my musings about her, I call her Ona or Aziza or Albutus – names that are strong, gutsy and exotically Eastern European.

I love this nameless woman something fierce. It’s not a love driven from deep in the loins. There is no primal sexual attraction. Though she is old enough to be my mother, the love I hold for her is not of daughterly admiration, nor is it a love of friendship or convenience. It’s an uncomplicated, organic love from one human being to another. It’s a love of deep appreciation and gratitude for the compassion and respect she displayed in a situation where sterility, ache and isolation ruled supreme.

Sunday, February 12, 2012

"S#!% Cancer Patients Say" by Woody Roseland

This made me laugh out loud several times because the s#!% is just so true. I'm sure you other patients and caregivers out there can relate. I love this Woody Roseland guy – way to be real and hilarious despite the insanity of it all. Rock on.  

Saturday, February 11, 2012

Less Stuff

We don't have the radiologist's read on yesterday's PET Scan report yet, but upon initial review, Dr. M says that it looks "overall better." She said that the radiologists will describe it more eloquently with their write up, but joked that her official summary is that "there is less stuff."

Less is more for sure.

She pulled up yesterday's PET Scan on her computer next to last month's picture and walked my mom and I though the comparative intricacies. Most all of the spots of concern have reduced in size or been eliminated. There are a couple spots that look more enflamed, but the many more spots that are less prominent outweigh those, giving me an overall improved report.

We did a lot of smiling, laughing and rejoicing. Any positive news is a big step forward and warrants some celebration. It's been a long time since I've had a PET Scan report lean toward improvement; it is such a relief. Anything is better than hearing that things look worse.

My case will be presented to the entire Sloan-Kettering Lymphoma Board at their meeting next Wednesday. This team includes all of Sloan's lymphoma gurus and specialists – including Dr. Sauter who will bring in the transplant perspective. They will look at my most recent sets of scans to try and determine what might be happening inside my body. They will also listen to Dr. M's presentation about the several continued treatment options we discussed and will offer their thoughts on the best course.

This team approach is why I chose to have my care performed at Sloan-Kettering. Having the details of my case again reviewed from many possible angles at this critical point will be key. Each doc brings his or her own background in research and patient experience, and I'm so fortunate that my case will be at the center of next week's conversation. I wish patients were invited to these meetings. I'd like to sit at the head of the table, listen in, and take furious notes.

I'm eagerly anticipating the call Wednesday or Thursday with further thoughts on what my scan means and what my future options are. Until then, I'll be enjoying a few days of freedom and will continue riding this wave of positive news.

Thursday, February 9, 2012

Another Pet Scan Lead Up

Tomorrow I travel to New York City for a PET Scan and a meeting afterward with Dr. M. It's been eight weeks since my last PET Scan – a rushed, unplanned scan in response to the severe pain I was having. That last scan showed a couple of new areas of likely disease involvement and increased SUV levels (hot spots) in the confirmed areas of disease in my hips, vertebrae and sacrum. It's probable – but not confirmed – that these hotter spots are lymphoma growth, but those hotter spots could also be my new immune system bursting into action and going after the Hodgkin cells in my bones. There is not an easy way to know. My medical team and I have a lot to talk about surrounding this debate and hopefully tomorrow's scan will provide some positive, tell-tale talking points to work with.

Eight weeks is actually a long time for me to go without a scan these days. I could vomit I am so nervous and on edge about it. Over these eight weeks I've gotten five infusions of Vinblastine chemotherapy. It was rough and tough on me and I'm hoping it was just as rough on the flaring areas of disease and everything has melted as hoped. These eight weeks have also brought a lot of random flaring, itchy rashes and disgusting amounts of strange white textures in my mouth. GVHD? It's not the scan itself I'm nervous about, the process couldn't be easier. What I am incredibly nervous about is what it will show and what that will mean for my future. I keep telling myself that I can't worry about what I don't know. Let. It. Be. That's much easier to write then to put into practice.

Craig has been integral in keeping me sane this week with positive distractions. It's probably the sanest I've been yet in the week before a scan. We've had a few date nights: went out to dinner, watched a movie, cooked meals together. Tonight he is taking me to a concert by an a cappella singing group that performed at his school with a promise to introduce me to the Fro Yo heaven that is supposedly Pinkberry. He loved it in Manhattan, but I wasn't allowed to eat there due to my dietary restrictions. Tonight at the new West Hartford franchise I will douse myself in dispensed flavored yogurt and fresh fruit toppings galore.

My mom will make the trek into the city with me tomorrow to make sure that I stay vertical, have a shoulder to lean on, and actually show up for my appointments. We'll catch the last day of New York City's restaurant week so hope to be able to take advantage of that and maybe a museum visit afterward. I'd like to check out the Whitney. We'll see. I'll either be in a really bad mood or a really good mood after the morning's appointments. Either way, time with my mom, the city's energy, good food after pre-test fasting, and art will probably help remedy the situation. But in reality, the entire day will probably be shot at Sloan.

This is a major crossroads. Images of standing in the woods at an exaggerated fork with six different paths to take keep haunting my dreams. If the scan shows this, then it may mean that. If the scan doesn't show this, then it does mean that. If the scan does show that, then it definitely means this. If the scan shows that but not that then this is probably, maybe, the direction we should go ... possibly. Or we could try this or that or this or do nothing or you're screwed, it's over.

Ugh. I just hope to get through tonight and tomorrow without totally getting lost in it. There will be some answers (or at least a clearer look at options) after I get through tomorrow. There is an inherent nausea and shakes that accompanies the wait for the doctor to come in the room to tell me about scan results. I can usually tell by the doctor's body language in a matter of five seconds. Then, it's just waiting to see how they will choose to make the delivery. I like it done fast: good or bad, rip the news off like a Band-Aid, please.

I've long stopped making predictions. I'll be happy with at least stable disease presence. But, I'd be even more elated if I get a coveted clear report.

Worried-about-trying-not-to-worry face

Wednesday, February 1, 2012

Intentions 2012

New Year's Day on Sunset Cliffs, San Diego, CA, crafted by Craig and me.
It is February 1st. January just came to a close, but I believe there is still time for a “New Year” reflection blog. Instead of writing my reflections and intentions with the start of the new year, I’ve been reflecting for the first 31 days of 2012. Sounds good, doesn’t it?

I’d like to say that I planned it that way, but I didn’t. It’s putting a spin on procrastination and avoidance to make it look like intention. To be honest, being about a month behind is about right for me these days in several respects. But that’s okay. Time has slowed some, procrastination and hesitation have increased. Focus has dimmed and concentration has been lacking. Shiny object over there? I’ll follow it. I am so tired most days that it is difficult to get to things that I think I most want to do. Though, I’ve been finding myself very busy with a full, rich, rewarding life. Despite the physical weights, I’ve had an incredible start to 2012. Maybe what I thought was important to me isn’t really. Overall, I’ve been trying to just let go and "be". I’ll never figure out the outcome of all this, so I may as well enjoy the hell out of the ride.

I truly have been writing this blog in my head for the past 30 days. I’ve thought incessantly about putting fingers to keyboard and getting it out, but for whatever reason, it isn’t until this arbitrary deadline of the end of January that I’m able to produce. Deadlines really do help. Because it was gestating for a month, it's a big baby. 

I looked back at my post “Intentions” written last year in early January. I see where I was coming from and I remember being in that place, but it reads like an entirely different person. I sound so young. I cannot believe the evolution that 12 months has brought and at the same time how quickly this year went by. I thought that I went through a lot in 2010. Ha. 2011 is a year to remember in many ways.

As I started writing this, I jumped to the “looking forward to in 2012” section first. That piece flowed like water. The looking back at 2011? Not so much. It’s still raw and delicate and difficult for me to process. But once I got into it, I couldn't believe all that I've done. Medically speaking, 2011 was a year of utmost focus, plowing through like a pile driver. In that post from Jan 2011, I stated that my intention for the year was “to be mindful in everything that I do and fully invested in each experience – from the simplest to the most complex. To live each day with intention and an open heart, grateful for every moment that I have.” I fulfilled that promise to myself to the extreme. 

I am proud to say that I lived 2011 as intended. It’s an important disctinction to say that things didn’t happen as I “expected,” “planned” or “intended”, but that how I reacted to them did translate through. I don't think I grasped what that meant at the beginning of the year, but 12 months of experience brought it into sharp focus. The year was wildly uncomfortable at moments, but I lived those times to the fullest, whether it was on my knees in tears begging for mercy or staring at the desert from 8,500 feet up on the peak of the San Jacinto Mountains in Palm Springs, CA.

I didn’t know what a prophecy last year’s intention would be. I wouldn’t have made it through without that mindful focus and full investment in the life-altering choices and sacrifices that had to be made. When you are missing your health and it takes every ounce of strength to perform most any activity, then mindfulness comes easily. It’s easy to fully absorb the wonderful moments and too easy to fully absorb the difficult ones as well.

I was 100 percent invested in all of the experiences I had last year ­– and for the growth that those experiences brought me, I am so grateful. My heart also opened wider than I ever fathomed it could. It opened wide so that I could let more people in, including my true self. It opened so wide that it hurt sometimes – it’s tender in there. It opened up wide enough to allow me to feel emotions that I never felt before: sheer fear and deep sadness and helplessness as strongly as the elation, determination, drive and joyfulness. This was a gift.