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
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.|