Lucy in the Sky with Diamonds

I desperately miss writing and apologize for not giving any updates and being so way behind on getting back to emails and messages. Things have been very difficult. I was in the hospital for 5 days last week. Extreme pain and the need for more blood products brought me in. I had severe pain over Labor Day weekend in my knees and my ankles, so bad that I could not walk. The nights were awful. Poor Craig had to deal with my screaming, crying anxiety attacks as I tried to handle the pain. I’d have Craig get me heat, then ice, then stack my legs on pillows, try to straighten them in front of me. Nothing worked.

While in the hospital, the goal was to titrate the pain medicine so that we had a good balance between the woozy side effects of the pain meds and keeping the pain under control. I’m home now and we’re not there yet. Today was very difficult. I felt sloshed and so weak. I puked last night after trying to get together my nighttime routine, then puked up a decent amount of OJ this morning after all the exertion of bringing my laptop, foods, and meds out onto the porch so I could enjoy some sun.

Everyone is very worried about me and wants me to accept more help and keep in better touch, but honestly, to send a text message or answer a phone call is so much work. I fall asleep and drop my phone while trying to reply all the time. I can spend extended amounts of time just staring into space and I hate it so much. I need to find some clarity. Obviously this amount of pain medication is too much but I’m so afraid of the level of pain if I come down.

My family and friends have been incredible whether it’s taking me to the hospital, visiting me in the hospital, or Craig and my mom being right there to get me whatever I need and make sure that I am comfortable.

My platelets are still very low, hanging around 10,000. Because of this, I am not able to continue on CEP oral chemo right now. I need to be at least 75,000 to take it. However, I am still able to take the Rituxan as it is a targeted antibody vs. traditional chemo and should not affect my blood counts. I got my second transfusion on Friday. I’m putting a lot of hope in this drug as I don’t know where else to turn.  Again, thank you for the supportive emails and comments. I look forward to when my head is clear again and I can get back to the craft that brings me so much happiness. Right now however, it takes me 20 minutes to write a short text message, so there won’t be any eloquent prose coming from this girl. In fact, I’m dictating this to Craig right now. 

Rhode Island Escape and CEP Start

No energy to write a long blog, though I’ve got many story nuggets collected. Consider this an executive summary of what’s been going on with me.

We spent two weeks in Narragansett, Rhode Island. It is beautiful, especially the beaches. We rented a cottage the first week with Craig’s brother and his wife and our niece and nephew; the second week with my parents and sister. We had visitors on top of that and it was relaxed and easy – for the most part.

Highlights:

-Getting to play with our niece and nephew in the sand and water and be with them for their morning and evening routines. They are adorable.

-Spending time together with our brother and sister-in-law who we rarely get to see.

-The sun and ocean and sand: warm, sparkling and soft.

-Bringing our beach chairs right down into the water and reading a book while the waves rode over our feet.

-Being with my parents and sister on the beach all day bringing back so many childhood memories.

-Steamers.

-Lobster rolls.

-Del’s frozen lemonade.

-Sunset cruise in Newport Harbor.

-Staying for a night at a special friend’s fabulous Newport ocean-side beach house – even though Craig lost the key and the debacle that followed.

-Escaping for a favorite couple’s wedding and reconnecting with many college friends from UConn.

-Watching Jaws on the beach with thousands of others on beach chairs under blankets with the ocean and a full moon behind us.

-Visits from friends and their kids and even an overnight with my parents’ longtime best friends and their son.

-Fantastic outdoor showers.

-A visit from my brother and his wife on the last night.

Lowlights:

-Adjusting to the side effects of the difficult CEP oral chemotherapy I am currently on – incredible fatigue, lightheadedness, thrush and mouth coating, no appetite. I started it on vacation so every day brought a little surprise. 

-Difficult mornings/early energy then big crash that didn’t jive well with other’s schedules.

-Major frustration surrounding how weak I am and not being to help out much with the kids or beach packing or anything, having to be so focused on not throwing up, and on garnering the strength to get my bum from the house to the beach.

-Breakdown moments missing my old days of swimming and boogie boarding and biking and paddle boarding – all of which I couldn’t do. Tried to push resentment away but it was difficult.

-Breakdown moments surrounding people having to help me and again, not having the energy I wanted. I had to keep shifting expectations and knowing that everyone else was there for a slow, relaxing time too and all did their own thing in our own time. It was very hard to let go.

-After one week on the CEP, I had to get my blood counts checked at the local hospital. Got a call that night from Dr. O that it was unsafe for me to go through the night without a transfusion. My platelets dropped to 6,000 and my hematocrit was under 23%. I spent the night in the ER/hospital with Craig receiving both blood and platelets. My port leaked and I woke up covered in a bloody mess. Otherwise, the nurses were very kind and the facility beautiful.

Because my counts dropped too low, I have been pulled off the CEP regimen until they rise. This was not unexpected as we knew it’ll be a fluid process as we watch how my body reacts to it; that’s the only reason I signed onto the idea knowing that there were no hard and fast rules but that we would listen to my body. I have not been on treatment for about 9 days now, only remaining on the Prednisone which is the “P”. I’ve been on Prednisone for almost two years now regardless, but it still makes me crazy. I’m very emotional and still dealing with breakthrough pain, pain management and functioning on narcotics trying to find some kind of balance.

I was in the hospital again for the day yesterday needing more blood. It is obvious that we will need to reduce the dose of this regimen or move on from it. I’m worried about playing catch-up again. The longer I am off of treatment because of low counts, the more chance there is of the cancer growing. Again, seeking that magic drug that won’t knock me down and will just keep things at bay.

We’re now talking about adding in Rituxan, which has just started being used off-label for CD-20 positive Hodgkin Lymphoma. It is a targeted antibody that has proven effective in NHL and CLL. Supposedly no side effects since it is even more targeted than SGN-35, however, big risk of scary infusion reactions.  I think that it is worth a shot though.

I took a complete break from all correspondence, social media, writing, blogging, etc. so it’s been a bit of a crash landing getting back into reality. Having everything scattered and unopened does not help my anxiety level. I can’t run and hide from reality forever. I just want to be comfortable physically and emotionally again and am working day by day to get there: some days are easier than others. Ones spent on the beach with the people I love were certainly the easier ones. Now it’s back to being alone every day and trying to figure all this shit out. What do I do with this time? How do I make these decisions? What if I’m just plain tired and don’t want to deal with any of it? Why can't I just keep burying my head in the Rhode Island sand?

Wild child, Anna. 

Big boy, Jake. 

Our Bonnet Shores rental - perfect.

The ladies in the back of the Jeep. 

Fellow sailors.

Newport sunset cruise. 

Beautiful Buddha in the sand. 

Flowers bigger than my face at the Umbrella Factory - and I have a big Prednisone-swollen face. 

Perfect set-up. 

The whole gang on the last night. 

Shift in Plan

I am here and okay. There have been some changes but I feel strongly that they are the right ones. I am no longer pursuing inpatient IVAC. It did not hold the disease for more than a couple of weeks and for the massive side effects it caused and all the required transfusions and hospital time it required, it seemed against all logic to keep going with more cycles. I’m having unmistakable lymphoma pain.

We’ve regrouped – long conversations with Dr. D, Dr. O, my therapist, family, special friends and most importantly, myself, over the past couple of weeks. I have decided not to pursue a third transplant at this point. I am trusting my gut and my instinct on this one, which are speaking to me very strongly. I am not on board mentally, physically or emotionally and I’m most concerned about quality of life right now. I would need to be in close-to-perfect remission

With that said, tomorrow we head for a beach vacation in Rhode Island where we’ll spend time with my brother- and sister-in-law and niece and nephew and then my parents, sister and maybe brother and wife with friends dropping in and out as well. Sam Dog is coming, too. I know that the sea and the sand will do wonders. We secured the house rental months back, and I'm so excited that the timing actually worked out for us to make it. 

I’m starting up an oral low-dose chemotherapy regimen today, which I’ll be able to bring with me. I’m getting hooked up with at-home Neupogen shots in case I need them. I’m able to get bloodwork checked at a lab down there. I’m in the hospital right now getting two units of red blood cells to boost my energy as my counts were very low and I’ve been very symptomatic (hematocrit of 7.4). Dr. O and his team are doing everything to accommodate this vacation realizing, as always, the importance of being able to manage this disease while still living my life.

I hope to have some quality writing time with my laptop over these two weeks away as well. I’ll write in more detail about what this all means but that’s the gist. I’m looking forward to sunsets over the ocean, lobster rolls, outdoor showers, and plopping my toes in the water, ass in the sand.

IVAC Cycle 1 Hospital Recovery

Goodbye sweet, curly ringlets. 

It is now Wednesday, July 24. I have been in the hospital for a week. That’s after being in the hospital for six days the previous week. I’ve been in the hospital something like 16 out of the last 20 days. But, my run will hopefully be ending tomorrow. As long as I can get through the night without any fevers and nothing moves backward in my bloodwork results, then I am going home tomorrow.

This truly is where I needed to be. In the very beginning I was so depressed, upset that I couldn’t do anything more than lie in bed and Craig said to me: “You’re in a cocoon right now. This is what you’re supposed to be doing.” And that’s what it was. I’ve been in a cocoon receiving the support, supplements, care and monitoring to bring me back to stability so that I could emerge a butterfly (completely metaphorically – I am far from a dainty, colorful butterfly right now.)

I will go home tomorrow and I will have one week to enjoy a little summer. Then, next Wednesday I am back in for a second cycle of IVAC. This time we will reduce the doses I receive of the drugs so that it is not so harsh on me. I can expect that I’ll probably have to return to the hospital after the six days of inpatient therapy to once again cocoon in a safe place.

IVAC Cycle 1 Recovery Highlights:

-Every day but two I received a blood product: sometimes red blood cells, sometimes platelets, sometimes both. Thank you blood donors.

-Though I was getting daily platelet transfusions, they just weren’t sticking. It was starting to get unnerving when every morning’s bloodwork would reveal numbers like 5 and 6 (norm is 143) despite having received a whole bag the night prior.

-It was just as discouraging to keep hearing my white cell numbers being read at “0” or “less than 0.1” day after day – no movement. This put me in the "neutropenic" category, which meant that I had essentially no immune system. With that comes lots of restrictions: no fresh flowers, no fresh vegetables, no fresh fruit, no takeout. 

Lips swelling, throat closing, mildly concerning. 

-I kept running low-grade fevers, so they ran every kind of test and blood culture imaginable. Everything came back negative, though they had me seen by the infectious diseases team and kept me on broad spectrum IV antibiotics just in case. I think it’s safe to assume now that they were just the neutropenic fevers that happen when the body’s disease fighting white cells are super low.

-I had an incredible allergic reaction to a bag of platelets. My body became covered in hives, all my skin became red and raised, my upper lip swelled with a bulge on its inside, the back of my throat swelled and I felt as if I would scratch my entire skin off my body the itch was so intense. My sweet, sweet nurse stayed with me and talked me down as she injected more and more Benadryl, on top of the Benadryl I had already been pre-treated with. It seemed to take forever for the reaction to fade and I admit I was very scared. If I didn’t have Susan with me to talk me through it I probably would have lost it.

-To prevent reactions the next day, I was pumped with extra IV Benadryl, super Tylenol and Pepcid. I avoided reaction but didn’t see the rest of the day. Obviously, with all of this Benadryl surrounding daily transfusions, most days were spent doing a whole lot of sleeping it off.

-I was able to leave the room with a mask on, so got some laps in around the floor. I also got two free massages and a Reiki session.

Handfuls of hair. 

-All of my hair fell out. On Saturday night, my follicles died and let it all go. I ran my fingers through my hair and would come back with handfuls. Of course, once I discovered this, I couldn’t stop touching it. I sat in my bed, not crying, just staring blankly into space as for the fourth time I watched my hair tumble out of my head. For a few hours I wrapped it around my fingers and pulled out chunks, made ponytails that would fall right out and ran my hands from front to back coming away with fingers wrapped in dark curls. The beautiful curls I had just had reshaped with a $50 haircut. I filled a teacup with all of the hair I yanked then had to force myself to stop by tying my headband over what remained and called for Ativan to force me to fall asleep. The next day, Craig brought his hair clippers and finished the deal for me. For the fourth time, I am now bald and look like a very identifiable cancer patient. It’s disheartening. Nothing to hide behind now.

Frothy tea, anyone? I realize I am disgusting.

-I got through 13 days in the hospital, including days receiving severely strong chemo, without vomiting, nor really any nausea to speak of. Today, the first day I’m not even hooked up to the IV pole – no antibiotics, no fluids, no blood products and I get hit with a huge bout of nausea. As fast as my nurse ran, the IV Zofran didn’t make it in time and she had the pleasure of wiping me down with a cool cloth as I wretched into the standard Pepto pink bucket – my absolute favorite. The nausea hung out for the rest of the evening.

What Got Me Through It:

-nurses that went absolutely above and beyond. We shared a lot of laughs and a lot of tender moments. I always felt safe and so well cared for. I could relax knowing I was in good hands. Same goes for the Patient Care Associates who were always there to bring me whatever I needed, to make my bed nice and tight, and after being here so long they knew exactly what I wanted at my bedside when I woke up and could anticipate my schedule.  I didn’t have one bad experience or clash.

-the mac and cheese, which was actually decent

-Mindless TV: Jimmy Fallon, Ellen, House Hunters International, anything Kardashians

-piles of blankets

-lots of family time with my parents, sister, brother and sister-in-law, even though I slept through a lot of it

-visits by my sweet, sweet friends full of laughs and stories from the outside world

-Craig’s nightly visits after work when we’d catch up on our days, trying to recreate what we have at home.

-FaceTimeing with Sammy Dog and seeing the pictures our teenage neighbor would text us of her while she was taking care of her.  

-Netflix movies

-A nice window view overlooking a gazebo and garden

-naps, naps and more naps

-laps around the floor with my IV pole (Jinx)

-Facebook/Pinterest/Twitter – more stalking than commenting.

-dumb magazines

-reading the cards and opening the packages Craig would bring from home that people sent

-All the e-mails and texts of encouragement, jokes, check-ins just to see how I was doing

My cancer pain is gone. My high fevers and night sweats have stopped. My palpable lymph nodes feel smaller. Let’s hope these all are good signs.

I’m ready as hell to leave tomorrow, but I believe everything worked out as it needed to. I’m once again safe to be in the “real world.” Being gentle with myself and keeping what my body has been through in mind, I plan to take full advantage of this week of freedom while I build back up and drink in the fresh air at every opportunity.

Boomerang

I was released from the hospital on Sunday. I was able to remain home until Wednesday afternoon when I was sent back to the hospital, where I still am. Everyone keeps saying it’s “where I need to be.” I understand this and guess I agree, but that doesn’t make it easier being in here.

My days at home were rough. I was very weak, lethargic, alternating from nauseous to hungry to not knowing what I wanted. I’d go from fevers to sweats to clamminess. Every tissue in my body hurt. It was obvious that the chemo was ravaging through me. I could barely walk up and down the stairs. My mouth began to fill with thrush and ulcers. I was not in any shape to take care of myself.

Craig took care of me on the weekend and in the evenings and my mom or sister or a combination of during the days. On Wednesday my mom and dad came together to take care of me.  I was scheduled to go into the clinic for bloodwork, but I knew before getting there that things would be very low. I woke up with dotted bruises along my arms and my stomach and even around my eyes, indicative of low platelet count (the blood cells responsible for clotting). I now know that’s called petechiae.

I could barely stand getting to the clinic in Avon. They pricked my finger and ran my blood through the machine. My counts barely registered. I am very neutropenic, meaning no immune system. My white blood cells are 0.1 and the machine couldn’t even calibrate the breakdown of types of cells within that. My absolute neutrophil count was unreadable.

Most concerning was that – as suspected – my platelet count was only 6 K/uL. People are supposed to fall within the 140-440 K/uL range. Transfusions are usually done around 12.

Dr. Dailey didn’t want me walking around like that and didn’t like the low and high temperatures I was having, nor the symptoms I was describing. I got a direct admission back to the cancer floor I had come from just three days earlier.  I’m still here and probably will be for a few more days. Despite having received the bone marrow-stimulating shot of Neulasta on Monday, my white cells haven’t started climbing yet. I’m on broad-spectrum antibiotic just in case there is an underlying infection. I’ve already received a bag of platelets and am right now waiting on a bag of red cells. I guess this is like a tune-up. However, they really don’t want to let me go until my white cells start trending upward and it’s tough to know how long that will be.

I’m wiped out for sure. But I signed up for this. I knew it was going to be hard. I guess it’s hard to imagine how hard it would get and it’s hard to remember that I’ve been this low before and I have come out of it. My doctors told me before we started that it was very likely I’d be back in the hospital after not too long receiving blood products and rebuilding while being monitored. No one sugar coated this for me, I just hoped I was going to slide through a little easier. 

Giving IVAC a Shot

I am in the hospital starting the IVAC chemotherapy today. In the simplest terms, I'm doing it because I'm not done yet. I hope with everything in me that this will be strong enough to take down the disease and am visualizing hard that it will. I am prepared that it will take me down with it for a bit, too, but am confident that as I've bounced back up before, I will again.

I am touched beyond belief by the outpouring of support I've received since my last blog post. I am one incredibly fortunate woman. Thank you for all your positivity and love.

Here we go ... .

A Complicated Relationship

Hope you enjoy reading my latest piece for The Huffington Post's Generation Why Series: "A Complicated Relationship." This essay personifies the cancer within me and focuses on the diseased relationship I have with this toxic lover that's got a stranglehold on me - the stuff of daytime television drama.

If it sounds familiar it's because it's born from a blog entry I wrote back in 2011, when recently out of my allogeneic stem cell transplant and learning what it was like to be in recovery, thinking that my cancer relationship was finally over. With this reworked piece, I honed in on our complicated relationship status and reworked it to focus on the continued stresses my lover brings.

As always, if you like it, please share it on your Facebook pages, "Like" it, Tweet it, comment here or on the Huffington Post page itself. I'd love to hear your thoughts! Thanks for reading.

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. 

[Vermont] 

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.

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.