Wednesday, May 29, 2013

Gemzar Cycle 2ish

I am two infusions into my second cycle of Gemcitabine. Today was supposed to be the last in the cycle, but it didn’t happen. Then again, there’s really no “supposed to” in my situation. I am far outside of any book regimens at this point. My doctors and I are just reacting and attacking, using my pain syndromes and my blood count levels as indicators of when we’re not using enough or hitting me with too much of the chemo drug.

We scaled down my dosage in the first cycle as my blood-clotting platelets were dipping dangerously low, disallowing me from getting the treatment as frequently as my doctors would want. Now, in this second cycle, my counts have been holding pretty well but I’ve had some bouts of wild pain set in, which makes them think that we need to whack a little harder. A little harder as in dialing up the amount of Gemcitabine I am receiving and also possibly adding in another drug: Navelbine to make sure that we are staying ahead of the lymphoma.

To my maybe not-so-secret delight, that change did not happen today. My platelet level was down to 50,000. It would be way too dangerous to treat me at that level knowing I’d drop even further and would very likely need a transfusion and be at risk for random acts of bleeding and all of that fun stuff. I get a bi-week. This works out wonderfully as I am hopping a train this weekend bound for Washington DC for some time with my college roomie. I couldn’t be happier that I’ll have no chemo symptoms to contend with (including the super swollen face look that I so adore.)

What I am having to contend with, however, is this on and off pain. It sneaks in like a jungle cat, all stealth-like, then wham – attack out of nowhere. It feels similar to having what I’d imagine the claws of a jaguar might feel like if they were scraping around in my sacral and hipbones. The nails dig in and then twist pulling all the muscles and tendons in around the pain that then emanates from that hot epicenter.

Heat helps. Pain patches help. Stretching helps. An increase in my steroid helps – though it’s incredibly frustrating to have to keep popping back up to higher doses of Prednisone (20mg currently) when I know all the side effects they come with. Even with these Band-Aids, sometimes the pain still breaks through and that’s when things really suck. A Dilaudid pill and sleep are really all that will help those times. I am grateful that it is not by any means constant and that I do have options with treating the pain syndrome.

There is no real certain way to know what is even causing the pain. My body could just be old and angry and arthritic, not at all unheard of for all the steroid breakdown my bones have probably endured, the battles going on within the bones, and how much work we’ve been asking my bone marrow to do for four years. It’s not necessarily that the cancer is growing, which is another reason why I wasn’t too keen on hitting it with more chemo today. I’d like to just ride this out a bit and see what happens over the next week. Maybe I just injured my lower back like any regular person. I mean, I was throwing kayaks around … . I kid. I was in on and off pain before that. The big reason I went kayaking was because I finally was having a pain-free day. 

What’s important is that it didn’t stop me from enjoying a weekend away with Craig, Sam Dog and longtime friends at one of their Vermont lake houses. Okay, maybe we had to delay it by a night as I waited for my pain meds to settle out, but that's what flexibility means. We made it, and it was complete with a fire pit and boat, dinghy and ATV rides, blended drinks, meat on the grill, and lots of laughs, reminiscing and catching up. Everything Memorial Day weekend should be. 


Tuesday, May 21, 2013

Up in the Clouds

As I do most mornings, I woke up far too early and lay in my bed for a while scrolling through my Facebook newsfeed until my body caught up with my mind and together we could roll out of bed. On several friends’ and organizations’ pages, I learned that Zach Sobiech died last night. He was a fellow young guy living with cancer – far younger than me. He was diagnosed at 14 and died at 18 from osteosarcoma, a bone cancer.

Maybe you heard his story already, but I felt compelled to share it because of how much he has moved my life. I learned about him when his now-viral YouTube video shared the online pages of Huffington Post’s Generation Why section with a story I had written.

His doctors had given him a year to live, and he made the decision that he wanted to spend that time with the people that he loved, at home, doing what he loved, which was songwriting and music. His song, “Clouds,” is a bit of a farewell, written knowing that the time he had left was short. Though what he sings about is tragically sad, its upbeat tone and positive lyrical spin demonstrate his zest and appreciation for life, as well as his peace with his impending death.

For anyone to reach that awareness is a beautiful gift, for it to happen for such a young man, even more so. His music video for "Clouds" went viral and a tribute was made back to him with several celebrities who were moved by his story and were filmed singing his song. I loved everything about this humble young man who made it known that the solution to happiness really is so simple.

This morning I watched a documentary about him,"My Last Days: Meet Zach Sobiech," created by SoulPancake. It is more than worth the 22-minute watch. Settle in and your life will be changed, too. Listen to what he has to say. I cried and cried all through it as I related on so many different levels. I cried because I am sad that he is gone far too young, but I also cried because I was so happy to know that he lived such a full life that he could be proud of, and at peace with, in spite of dying from disease. As they say at the end of the film, he touched so many lives not because he was dying, but because of the way he lived. That is beautiful and something I aspire to every day.

Learning of Zach’s death, and then more intimate details of his life, inspired me to seize my day. As he touches on in the documentary, I too, often live in the extremes: really good days and really bad days. I woke up pain-free and was determined that today would be a good day. I pushed my weak, little body – with barely any red blood cells – to get my kayak out of the shed from under the snow blowers and fertilizers and stand-up paddleboards, into the Jeep and onto the river.

It was the first time it’s been out this season and the first time I had ever kayaked without Craig to help me. Though it took a long time and a lot of effort to get everything together to get that boat in the water, I did it and I was proud. It was 85-degrees and sunny today. The river was so peaceful, and I couldn’t help but think that this total stranger’s spirit had helped to get me there – helped to give me the perspective to even believe that I could. Fear and excuses were washed away today and I just had to go.

The Jeep is full of mud, the shed a mess from my struggle, and I’ll be sore as hell from lifting and dragging the 50-pound kayak, but the self-satisfaction and the peace felt floating with the current was worth every effort.

Not including Zach, three people in my online cancer support world died in as many weeks: two from Hodgkin Lymphoma and another from bone cancer. It happens far too often, but that is my world, brutally aware of the realities of this disease. As much as it’s a punch to the gut every time, it also adds fuel to my own focus to not take this life for granted. I am still going strong and for every added day I’m given, I am so grateful and I try to live it in their honor.

Thanks for the song and your spirit, Zach.

Tuesday, May 14, 2013

To Oncology Nurses, From a Seasoned Patient

Check out my latest contribution to The Huffington Post. It's addressed to oncology nurses and offers a patient's perspective on what works and what doesn't when it comes to nursing care. Please like and share if you find it at all thought-provoking.  I'd love to hear your thoughts and experiences. Drop me a message in the comments section here or on the Huffington Post's site. Thanks for reading!

Monday, May 13, 2013

Reflecting on Four Years

When my mom takes notes at doctor’s appointments she likes to star and quote the good stuff. She loves when doctors give me positive comments and wants to be sure I remember them. Often, I don’t even hear them because I’m so focused on the treatment and brush off the compliments on my progress.

Case and point was last Wednesday’s check-in with Dr. O and team who have been overseeing my care from afar while I receive the infusions locally with Dr. D. In my notebook ­ – the third one we’ve filled with appointment notes since diagnosis – there are a few quotes by Dr. O that my mom felt important enough to record:

“Mucho Fantastico!” (after hearing how my lymphoma pain and b-symptoms have diminished)

“You look great!”

“You are closer to normal than you think.”

The last quote did resonate with me. He said it after I started peppering him with questions about what my restrictions are and getting answers back that seemed like I had total freedom as long as I just listen to my body. I am not used to this after so many years of feeling like I’m shackled.

He got where I was coming from when asking about Zumba and yoga and just simply said: “It seems like many of these questions are related to whether you’re normal or not and you are closer to normal than you think.”

This was a dream phrase for me to hear, but still hard to process. Last Wednesday, May 8, marked four years since my diagnosis date. As I was in NYC for my appointment and distracted by everything that entails, it completely slipped my mind until I got home after a long day and Craig greeted me with: “Happy Cancerversary.”

Woah, gut check. Four years. I can either say:

“I’ve been going through this awful shit nonstop for four, long years.”

Or, I can say: 

“I’ve been keeping ahead of cancer for four years and thoroughly enjoying my time despite disease and its baggage.”

Both are true, but this year I lean much toward the latter. It’s been four years and I’m still alive – that’s kind of huge. I rarely get angry about my situation anymore. I’ve come a long way toward integrating it into my life and not letting it take over my life. I’ve learned over these four years that it’s all about balance. Balance the bad with good. Balance the down days with excitement. I slip up – often – and lose my focus, but I’m proud of the coping mechanisms I have found to bounce back.

I don’t know if I quite think of myself as “normal,” especially since I’m still getting weekly chemo injections, but am ecstatic that my oncologist even entertains that concept. I am comfortable with thinking of myself as “more normal than not” and that opens up a whole lot of doors for me, which brings a lot of uneasiness and a lot of pressure, too.

I am trying to find my place in the great, big, wonderful world. Sometimes it’s difficult when I am feeling better because I want to go out and do everything: pick up work, learn an instrument, get into pique physical shape, conform back to my old life or everyone else’s life, then I end up in the ER with shortness of breath and heart palpitations and I realize that I’m not like everyone else. 

Am I sick or am I not sick? Can I move forward or not? There’s no clear answer and I work very hard not to get caught up in analyzing it. Some things are just unknown. My fate – anyone’s fate – is one of them. I just happen to have mine staring me very close in the face all of the time, so I think about it more than most. 

Whatever will happen tomorrow, or next month, or four years from now, today I feel well and for that I am grateful.

At the beginning of 2013 I set my intentions and vowed to frame my year around the John Borroughs quote: “Leap and the net will appear.” Looking back on four years, I’d say that’s appropriate for where I’m at.

I’m making leaps. Big leaps. Small leaps. Planned and unplanned leaps. So far, a net has always appeared and with each successful landing my confidence has made its own leap upward – little by little. Jumping isn’t so scary anymore.

Monday, May 6, 2013

Can't Seem to Stay Away: Another Hospital Stint

For three nights I’d wake up from a dead sleep gasping for air. I’d sit up straight in attempts to get the blood moving then would be acutely aware of my heart and its beats. My heart was trying too hard. It felt tired and labored as if it were working overtime. As I’d sit there and try to regulate both my heart and my breathing sometimes I’d feel a blip in the rhythm, a missed beat in the heart’s drum line. It took a long time to fall back asleep after each episode, terrified that I wouldn’t wake back up.

I  received my third dose of Gemzar chemo last Wednesday. My platelets were again low and my anemia bordering on transfusion-required levels, but we went ahead with the reduced dose, again with the thought that the cancer is the greatest threat and consistency in attacks against it is the best strategy. All went smoothly except for a high heart rate (140bpm), consistent with the high heart rates I’d been registering at the clinic for the past week. I told Dr. D about the nighttime heart episodes and he sent me off for an EKG. On it my heart rate registered at 90bpm and all looked normal – of course. I felt well enough for tapas Mexican with my mom and a grocery shopping spree to replace the hundreds of dollars worth of food we lost when our fridge and freezer went kaput last week – sigh.

The chemoey feeling crept in that evening: cellophane-wrapped muscles, creaks everywhere, bleary eyes and a nauseating fatigue. I went to bed early. Again I awoke with a start, gasping for air, but this time, instead of my heart going crazy it was my left arm. It was flailing and jerking about of its own accord. I elbowed Craig hard to witness it as I cried and groaned not knowing what to do.

In reality, the waving and flailing lasted about 15 seconds, but it felt like 15 hours. When it stopped I couldn’t even touch my arm, the muscles were so sensitive and dead tired from the dance it just did. I thought maybe I was half in dreamland still, but then it happened again, and again, and again – each occurrence just when I fell back into a dead sleep. I thought I was having seizures, so I took an extra Neurontin. I take it for nerve pain, but I remembered Dr. D saying it is also a seizure medicine. I figured I’d give it a shot and was thankful that it carried me through the night with no more episodes.

My worries about this were compounded by the fact that I’d been having tremors in my right arm for about a month that I only very recently alerted my doctors to. My original plan of action was to brush that under the rug, as I simply didn’t want to deal with it. However, when it happened half-dozen times and joined up with some serious lightheadedness, I knew I had to bring it up. I’d start to see stars and then my right hand would start shaking like it was trying to develop a Polaroid picture. Those episodes could last up to a minute and my arm would be dead tired afterward.

It all warranted a call to Dr. D and Dr. O Thursday morning and I knew what that would mean. To the Emergency Room I went at their insistence, though I avoided it until evening when Craig got home from work. Craig was very worried. I can always tell by the dark bags that instantly develop under his eyes. I hate it.

The big worry from my doctors was pulmonary embolism (a blood clot in the lungs) or a blood clot somewhere else in my body. I already have many of the risk factors – blood cancer, chemotherapy treatment, not super active. A clot would kill me. The secondary worries were lymphoma had spread to my brain, causing the tremors; lymphoma had spread to my upper spine pressing on vertebrae or squeezing disks causing the tremors; very low blood counts; a heart issue. Awesome: something wrong with my heart or brain or a life-ending clot.

I lived in the Emergency Room for a full day. Literally, more than 24 hours – 5:30pm Thursday through 7pm Friday before I was transferred to a hospital room for a second night of observation. After about three hours, it was decided I’d be admitted, but it would have to be to a floor that had telemetry at the bedside, so that they could keep me on a heart monitor. These beds are limited and there were none to be found for me.

Craig stayed/”slept” there with me in a hard chair the first night with his forehead on a towel on a table. I “slept” for 15-minute clips on an ass-breaking, essentially cushion-less stretcher. I was tethered both from my port to the IV pole, which was giving me hydration, and the heart monitor via five lines coming off my chest attached to my skin with sticky pads, the glue from which I’m still picking off days later. After 12 hours and no signs of a bed opening, the ED staff was kind enough to get me a real hospital “bed” and move me to a room with a window in a quieter area. The bed felt like that in a luxury hotel room.

The Hartford Hospital Emergency Department staff was extremely kind, thorough and listened well to my symptoms. I am a fairly frequent flyer so I know the types of things they are looking for. But no matter how great the staff is, by nature the ED is a busy, loud, fast-paced place. Alarms, intercoms, alerts, patients yelling, seem to never end. The hospital is squat in the middle of the city and many use it as their primary care option, therefore it can get backed up easily. Plus, they handle major traumas flown in from emergency sites or the sickest of patients from other hospitals on LIFE STAR, the hospital’s critical care helicopter service.  

Every few minutes over the intercom – the same intercom that plays through patient’s bedside speakers would alert:

“Active trauma three minutes out!”
“LIFE STAR here. All appropriate personnel report to Red Pod!”
“Activated stroke five minutes out. Patient is not registered!”
“Any available nurse or PCA to Red Pod room 12 stat!”
“Patient assist needed in Orange Pod room 25!”

So on and so on. In the waiting area Craig and I witnessed a young man with an infected month-old gunshot wound. Yes, I saw the whole thing oozing through the shoddy dressing when he lifted his pant leg in triage. He was probably 17-years-old, shackled at the ankles and accompanied by a Hartford police officer.

Amid the intercoming, we heard a man screaming at the nurses in the hall. He was saying that his father came in there fine, they injected him with something and now he was in the ICU and they wouldn’t let him see him. He was demanding to see his dad, but was being too combative with the medical teams. Security came and there was lots of drama. And I thought I was having a tough day. The “Be kind for everyone is fighting a battle” quote kept repeating in my head.

My father wasn’t dying and I wasn’t recently shot, arrested and shackled, but the two-night hospital stint was pretty intense. I was given the full workup, kinda like the Gold Package at the car wash:

Intent: Check a brief snippet of my heart’s electrical activity
Test: EKG
Result: Normal

Intent: Rule out infections and check for deficiencies
Test: Blood pulled from my port and my arm
Result: Very anemic requiring transfusion (H and H 7.5 and 23%) meaning not enough red blood cells to carry sufficient oxygen around my body, platelets down to 33,000, white blood cells down in the 2s. All other chemistries looked ok and no infections found.

Intent: Rule out an internal bleed that would explain why my red blood cells dropped 10 points in one day
Test: Doctor stuck a lubed finger up my asshole and pulled out feces to check it for blood. Entirely pleasant experience. Case and point of what I mean when I say dignity is out the window and body becomes object during all of this.
Result: No blood

Intent: Rule out blood clot
Test: CT Scan with contrast that makes your whole body hot and you feel like you just peed yourself.
Result: No clots, only swollen lymph nodes showed, which we already know about.

Intent: Rule out chance of fluid that may have developed around lung or heart
Test: Chest x-ray
Result: Totally clear around heart and within lung, much improved after the whole pneumonia and drainage debacle of last month.

Intent: Track heart rate and blood pressure to watch for abnormalities
Test: Hook me up to a heart monitor that alerted angrily every time my heart rate rose above normal.
Result: I was going into periods of high heart rates up to 150bpm (an average heart rate for me is around 60bpm)

Intent: Check for cancer activity in the brain and/or discs pinching or lymph nodes pressing on cervical spine.
Test: MRI of my head and upper-neck. I was in the machine for one hour and 15 minutes because we were imaging two areas. I had to lay perfectly still for that entire time with my head squeezed in place in a cradle with pads on either side of it plus a mask – similar to a football helmet’s mask – over my face. I’d never had the mask before and when they lowered it to two inches from my face I thought I’d freak. But somehow I didn’t. By alternating between body scan meditations, visualizing myself on the Whitsunday Islands in Australia, and turning the deafening pounding sounds of the machine into song lyrics I made it through. The jack hammering was akin to the intro to Fat Boy Slim’s “Funk Soul Brother.” The earplugs they gave me did nothing to reduce the intensity of the banging as the oversized magnets did their work. I refused to open my eyes once I entered the narrow-ass tunnel for fear of how I’d react to seeing the face mask then the inside of the tube just a few inches further out. The tunnel is only about 24-inches in circumference. Buried alive much?
Result: No brain activity!!!!!!!!! A few lymph nodes showing in my upper neck, but likely ones we already know about.

Intent: Check for any structural abnormalities in my heart
Test: Echocardiogram, basically an ultrasound of the heart
Result: Everything looks structurally sound and working as it should

All of these tests on top of the incessant vitals checks are what kept me from any rest, but the results of which are now letting me sleep easy since I’ve been home. We ruled out many, many potential problems that my symptoms pointed toward. As awful as it is to go through it all, this is very valuable information and often as important as finding out what is wrong. It seems that it was all related to episodes of elevated heart rates and very low blood counts. We still don’t have a definitive on where the tremors and arm jerking came from.

I got the sign off Saturday afternoon with promises that I’d follow up with my oncologist and now new cardiologist. I was given a prescription for a baby dose of the beta-blocker Coreg. A heart medication I have been on in the past when I was having very similar episodes while in Texas for a clinical trial. A cardiology workup at MD Anderson Cancer Center found I was having periods of A Flutter and high heart rate. Like it did then, the beta-blocker will keep everything even-steven so that my heart isn’t working overtime.

Craig picked me up in our Jeep Wrangler. It was in the high 70s. The weathermen had been reporting all morning from my little, tiny hospital TV that it was a top 5 weekend. I had to shut it off so upset that I was missing it.

Knowing my frustrations of not only being stuck inside, but also being attached to an IV pole and a heart monitor meaning I had to call for someone to disconnect me every time I had to pee, never mind reach anything, Craig created a space of ultimate freedom for me. He surprised me by not only swapping the hard top for the soft top, but showing up with no top and no doors for a totally exhilarating, sun worshiping ride to Elizabeth Park where we checked out a huge healthy living expo amid the beautiful flowers. From chains to freedom.

The heart episodes seem to have subsided, though I’m getting used to how much the Coreg reduces my blood pressure as a side effect of keeping my heart rate even. I have to be aware of shifting positions and getting up too quickly. It takes longer than it does for most people for my blood to get from my feet to my head when I get up. I just need to take my time. No limbs have been flailing uncontrollably and my mind is more at ease knowing there are no tumors in my brain. I actually slept a soundless 12 hours last night and loved basking in the sun then running errands – top down – in the Jeep all afternoon.  

                                       I much prefer historic Elizabeth Park's scenery to hospital rooms.