Saturday, January 26, 2013

Skeletons in the Closet

We all have one of those closets that you need to kick its door with force to be able to shut it closed, as there is so much junk behind its doors. However, when it’s shut no one knows the difference nor suspects the mounds of hoarded crap on the inside.

Earlier this week, it was as if the door on mine busted off its hinges and all the junk just couldn’t be contained. Figurative glass vases, decks of cards, untouched workout equipment, old coat upon coat, dusty pillar candles, all came flying at my head. I felt as if I were buried in bags filled with more paper bags, reams of tissue paper, rolls of wrapping paper, and fabric scraps that I might use some day, drowning in the very things that that closet door usually keeps safely distant from me.

However, instead of those inanimate objects, it was every Hodgkin Lymphoma B symptom I have experienced in 3-and-a-half years of living with the disease. Things spiraled even more out of control after Tuesday. My mom came over to drive me to get my Cortisol level checked and to spend the day caring for me as I could barely see past the bridge of my own nose, woozy with pain and weakness.

Throughout the day and night, everything came flying at me: incredible pain in my bones and aches in my body tissues; shaking chills; insatiable itchiness on my lower legs and chest, sweats that soaked so bad I had to change my clothes four times throughout the night; swollen, palpable lymph nodes; nausea; a good vomit session as soon as Craig pulled in from work to take the caregiver baton; lack of appetite; fevers reaching nearly 103 degrees; weakness beyond belief. I was a hot, hot mess.

I was in touch with my nurses at Columbia throughout the day, filling them in on the downward spiral. It got to be 8:30 Wednesday night and I was so fevery, I was crying to Craig and contemplating a trip to the Emergency Room. We were weighing the options of what to do.

Then my cell phone rang, and it was Dr. O himself, calling me from California to tell me he heard about everything going on and to talk me through a new thought process. That’s the sign of a truly good doctor. He wasn’t even in his office, but took the time to call me to figure this all out and even give me his cell phone number to call or text him if anything further came up after our conversation. He immediately made me feel better as his suggestions matched seamlessly with the layman’s medical thought process I had been having also.

He didn’t even want to wait for the Cortisol level return. He knew instinctively that this wasn’t an adrenal failure, but that instead the anti-inflammatory powers of the Prednisone – even at such a small dose – had been holding back all of the Hodgkin symptoms I was now experiencing. The Prednisone had been my closet door and when that busted open, out came all the realities of what was happening inside my body. He was right. 24 hours later, my Cortisol level read at 12.4 – actually a little higher than normal.

He told me to take 10mg of Prednisone that night. Within an hour, it was as if that door was shut again and all the crashing, clanking, and screaming stopped. All was quiet, balanced and stable again. It was incredible. He told me to continue to drink fluids like a horse, which I did, and continue to do. We conceded that the NAE Inhibitor trial I was planning to go on was not right for me at this time, despite all of the set-up we’d already done to work toward it. My disease is in too much of a flare right now to risk going onto such a novel therapy with very little data behind it. I need something more tried and true at this moment.

We are instead going with a clinical trial which Dr. O had discussed with me when we first learned from my PET Scan that the Revlimid had stopped working. At the time, he had wanted to keep it “in his back pocket” because we knew that it was something that would very likely work and that we should hold onto it until I absolutely need it and try these other novel therapies until then. I can’t be burning my bridges until necessary. Options are few and far between. Well, now I need it. We need to melt this current disease.

Next week I’ll be starting up on a trial at Columbia that combines Brentuximab Vendotin (SGN-35) and Bendamustine chemotherapy. I have had both of these drugs in the past, but never in combination, and never at these lower doses. Apparently, his research team has had good luck with using them together synergistically, having put several people into remission. He hopes that that will happen for me as well. We don’t know how long a remission would last, but a remission will give us options to decide the next step and as he says “turn this into a manageable chronic disease.” I feel completely comfortable with this plan.

Monday brings me back to the city for yet another set of pre-tests and consent forms to sign, then I’ll start treatment as early as Wednesday or Thursday. Time to reset everything and refocus on this new “plan”. I’m just so incredibly grateful for that that damn closet door is again shut tight. That shit was scary in there. No more pain. No more fevers. No more vomiting. Just back to my normal aches and fatigue, which I am now oddly thankful for in comparison.  

Wednesday, January 23, 2013

Withdrawal and Dependency

I passed all of the pre-tests with “flying colors” to get onto the NAE inhibitor Phase I trial at Columbia: healthy heart, healthy urine, normal blood cell levels. Turns out the sponsoring drug company will pay for travel and accommodations, so I booked a hotel suite just a couple blocks away from clinic adjacent to Rockefeller Center. The amenities that sold me were the kitchenette, free WiFi, free filtered, bottled water, and a free “yoga kit” brought to my room on demand.

All of our questions were answered, the consent forms have been signed, and the treatment calendar was drawn up by the study coordinator. I would start treatment on Monday, Jan. 28, and live in midtown Manhattan through Feb. 12. It meant that I had to back out of my performance of “The Vagina Workshop” in The Vagina Monologues, as I wouldn’t be able to make the rehearsals nor the performance even. It meant that I’d have the four days free to attend the San Francisco Writing Conference I’d won a scholarship for, but wouldn’t be able to swing our long-ago booked San Fran/NoCal vacation that Craig would be joining me for – with flowers in his hair – the following week. My medical team would plead with the drug company to allow some flexibility in the regimented schedule to allow a five-day delay on the second cycle start. Results still pending on that one. 

Though the infusions themselves are only twice a week for 60 minutes, each of those days requires blood draws every hour, on the hour, for six hours afterward, and each day in between requires clinic visits for EKGs of my heart, urine testing and more bloodwork for safety monitoring and data gathering. I’d go back to the city for another overnight early the following week then have a week off before starting up the second cycle.

We had a caregiver/company keeper rotation set up between my mom and Craig, and some space built in for alone time for writing projects, which I planned to do by the natural light that pours through the grand windows of the New York Public Library. I was beginning to research Broadway shows, concerts (both Fun and Mumford & Sons are playing in the city while I’m there!). I started back up my e-mail subscription to midtown Manhattan Groupon and Living Social deals.

After much internal (and external with my husband) debate, we went away on a previously booked ski trip to Vermont with two incredible friends and a crew of their friends, who quickly and comfortably became ours this past long weekend. I was hesitant to go because I was pissed I wasn’t allowed to ski nor drink – and what is a ski weekend without time on the slopes and an après-ski IPA?

I was anxious about being away for a three-day weekend when I’d be away from home for long stretches at a time again so soon. Then, I had a change of heart and realized I was getting ahead of myself, disallowing myself fun now because of the tough stuff that was around the corner. I could still have a fun, relaxing weekend, just doing it differently. This is my new life and I can’t avoid that by getting caught up on what I used to do in the past. Adapt. Adapt. Adapt. We packed up Sammy and headed north. Craig would ski both days and I would hang back with those who didn’t.

I couldn’t have made a better decision, as the weekend was full of hearty laughs, delicious food, fun people, reading, relaxing, football watching, and dog cuddling, all in a fantastic, eclectic Vermont home with views of an expansive frozen lake and snow-covered trees made more beautiful by passing flurries of fat white flakes. I didn’t think about cancer or my upcoming treatment for more than a fleeting moment.

What I didn’t know at the time was that it was a last hurrah before shit hit the fan on the evening of MLK day. Seeing as I’ve been relegated to the couch and the bed from Monday evening to this morning when it’s now 4 a.m. and I’ve been up since awakening with excruciating pain at 2:30 a.m. yelling to Craig that I need hospice care, things have gone downhill fast. After two Aleve and a heating pad, I am off the hospice thoughts, but only the very edge is taken off. I am in some of the worst pain of my life.

This clinical trial does not allow a patient to be on any amount of steroids. I have been on a therapeutic dose of 10mg Prednisone for months now after trying to come off of it after several months at 60mg necessary to clear up post-radiation lung inflammation and having dizzy spells and blood pressure drops without it. I was told on Friday that I’d have to come off the Prednisone again, instructed to drop to 5mg on Saturday and Sunday then cut it out altogether on Monday. Being at 5mg over the weekend in VT wasn’t so bad: I had some headaches and back pain in the morning, but it went away with Aleve and breakfast. However, when my body realized by Monday evening that it wasn’t getting any, it went ape shit.

10mg is about the amount of Cortisol that our bodies produce naturally, which can be replaced/supplemented with steroid therapy. Cortisol is a life sustaining adrenal hormone essential to the maintenance of homeostasis. Called “the stress hormone,” cortisol influences, regulates or modulates many of the changes that occur in the body in response to stress. Without it, the body can’t effectively fight disease and stress or regulate itself. Well, from the symptoms I’m having there is worry that my adrenal glands, which produce the hormone, have gone caput after being in a state of stress for so many years now, going through so much treatment, and having been on so many steroids (a double-edged sword).

Without even the small level of Prednisone, I’ve been riding a wave of severe Hodgkin symptoms and steroid withdrawal: fevers in the 100 range, soaking night sweats, sleeplessness, extreme fatigue, shortness of breath, incredible pain in my back, hips and pelvis, aches and swelling in my lymph nodes, insatiable itchiness on my legs, lack of appetite, nausea. Basically, the works. 

My medical team does not like this and is highly concerned. We already know that the disease is on the rise and that the Prednisone acts as a Band-Aid masking symptoms. As my nurse explained to me today, once that Band-Aid is taken off, everything that’s been brewing underneath is exposed – hence all my b symptoms raging. On top of that, the fact that I may be dependent on the Prednisone for my Cortisol brings its own very serious dangers, as the body cannot function without those stress response functions.

In three hours I will get a blood test locally to check my Cortisol levels without the steroid. If they are less than 5, I will have to go back onto a Prednisone course, which would disqualify me for this clinical trial and wipe out all of those beautifully laid plans above. My body’s drug dependency will probably disqualify me from many trials. I don’t know yet what the plan of action would be, but I obviously need a treatment that works – fast.

If I do have enough Cortisol, it may mean that these are just steroid withdrawal and Hodgkin flare symptoms. I’ll be able to move forward with the clinical drug trial, and they’ll give me a drug similar to, but not, a steroid that will help to stimulate some of my functions that are lacking.

I’m scared and exhausted but can’t sleep due to the pain. I have to get through another whole day and night before Cortisol level blood test results return and we can determine the safest way to get me feeling stable again.

"It's better to feel pain, than nothing at all ...
So keep your head up, keep your love
Keep your head up, my love
Head up, love."
-The Lumineers

"Stubborn Love" by The Lumineers from Look Sessions on Vimeo.

Friday, January 11, 2013

Cutting Our Losses

MLN4924 chemical structure
At some point I'll write more eloquently about the adventures of the marathon day that was Wednesday, but these are the bare bones facts that I'm dealing with right now. 

My ESR is 118, indicating huge amounts of inflammation. The lymphoma in my pelvis is growing. At one time it was a couple spots on each side, now those spots have connected and filled in. This area showed up as very hot on my PET Scan Wednesday, then was confirmed further with an MRI late that evening to determine if the hot spot was showing inflammation from cell death or soft tissue growth from expanding lymphoma. Very unfortunately, it's the latter. We know for very certain.

There are no new areas of involvement and the hip/pelvic area and a precarious spot on my femur bone is all we are contending with at this point, but they are spots that can't be ignored. If the lymphoma continues to grow it will break apart my bones and then I'm in trouble and a hell of a lot of pain. I've been given restrictions: no contact sports, no skiing, no running, no kickboxing - nothing that would put me at risk of fracturing that femur or shattering my pelvis. However, I'm encouraged to start lifting light weights, continue my walking and yoga, as these pieces will be vital to keeping my muscles, bones and heart strong. I met with my naturopath today to discuss more diet and supplement answers as well. I hit the machines at the gym. 

Tuesday, January 8, 2013

So Many Tigers

I originally learned of this Zen story from a friend who shared it in her blog. I now think about it all the time. Nothing speaks truer to how I am feeling right now, so I will let the tale give a little insight. A few unexpected new tigers have emerged in my life – tigers that I once thought were strawberries I could grasp onto for hope and support. Each new tiger brings a pack as everything in my life and my treatment plan is so interdependent. I see a lot of yellow eyes and baring teeth focused on me right now while I dangle here on a vine awaiting answers. 

Tomorrow, I will be sucking strawberries when I finish my PET Scan and await my meeting with my doctor, ignoring the ridiculous amount of tigers and gnawing mice around me at the moment. Because what the hell else can I do?

“There is a story of a woman running away from tigers. She runs and runs and the tigers are getting closer and closer. When she comes to the edge of a cliff, she sees some vines there, so she climbs down and holds on to the vines. Looking down, she sees that there are tigers below her as well. She then notices that a mouse is gnawing away at the vine to which she is clinging. She also sees a beautiful little bunch of strawberries close to her, growing out of a clump of grass. She looks up and she looks down. She looks at the mouse. Then she just takes a strawberry, puts it in her mouth, and enjoys it thoroughly. Tigers above, tigers below. This is actually the predicament that we are always in, in terms of our birth and death. Each moment is just what it is. It might be the only moment of our life; it might be the only strawberry we’ll ever eat. We could get depressed about it, or we could finally appreciate it and delight in the preciousness of every single moment of our life.” ― Pema Chödrön

Friday, January 4, 2013


I am so tired. I'm sleeping 11 hours a night and still feel like I need a nap. Any little bit of exertion is enough to totally exhaust me and usually make me nauseous. I went to the gym and did five minutes on the elliptical. I thought I was going to have a simultaneous heart attack and vomit session. I played it cool, slinking off the machine and pretending like I was just doing short intervals and heading to the activity room, but instead ducked out down the back stairs.

Come to find out after bloodwork yesterday, I'm pretty anemic. A normal woman's hematocrit is supposed to be in the 37 to 51 percent range. I am at 29%. Not enough for a red blood cell transfusion, but enough to make me feel lousy. This means that oxygen isn't being efficiently carried around my body, hence the heavy eyelids and tired heart.

Tonight, we're going out with friends for delicioso 100% verified humane burgers. My hope is to get an iron kick to get me through the weekend. I have lots of writing to do and ornaments to put away.

Adding to the exhaustion is my PET Scan Wednesday. Thinking about that naturally makes me want to curl up in a ball anyway; it's just too much. To stop thinking about it, Sam Dog and I went for a walk at the park. The snow we had to trudge through made it doubly exhausting. I got home a sweaty mess, but it felt good to be a little active.

There is a lot of work going on in my body - hopefully it's on the winning side of the battle this time. Fatigue can last for years and years for cancer patients after they complete treatment. Chronic fatigue is common for post-allo patients. Fatigue is a side effect of the Revlimid. I understand why I'm tired.

Now it's time for a nap until Craig homes home. Sweet daydreams.

Wednesday, January 2, 2013

Intentions 2013

I wish that it were different, but I ended 2012 on a downbeat. The legitimate physical constipation that I feel has permeated into the rest of my life. I’ve been emotionally and creatively constipated too. I’ve been extremely tired and distracted, unable to focus or to fully invest myself in anything. I really let myself go over the past month with bad eating and drinking habits. I stopped practicing yoga. I started sleeping a lot. I stopped juicing. I started eating dairy and sugar again and oh, guess what? I feel like crappola. I’d venture to guess that I’m not the only one that hates themselves after the holidays.

I’ve been crying a lot, feeling lost and confused about what direction my life is taking and about where I fit in the greater scheme of things. I feel like I’m so different from everyone around me who seem to be so much more interesting and at ease – and also so different from whom I used to be. I’m now more removed, quieter, and self-conscious. I get easily frustrated at my feelings as I know it’s just my own crazy manifestations. I’m in serious need of a boost.

I looked back at last year’s blogs around this time and I was going through a similar emotional “nadir.” Maybe the end of the year is just tough for me for whatever reason. All of that hype and togetherness and connectedness fading out to just me, again alone each day trying to figure out how to make the most of it and what in the world that means.