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.

Beach Therapy

I am feeling about 95%. Feeling very strong, very normal, very me. With each recent treatment it seems I'm recovering further, getting much closer to my normal self before the next treatment. Much improved over the first few treatments. Let's hope this trend continues. I know I had several days of fatigue and acheyness, but it seems like forever ago. 

This weekend my parents "kidnapped" Craig and me for a day away in Rhode Island. My little brother (who despite being seven years younger than me, towers nearly a foot over me) joined in on the road trip too. So it was me, Mike and Craig getting nice and cozy across the back seat of my parents car, Dad behind the wheel, mom manning the music and AC/open window swapping. 

Like three five-year-olds we entertained ourselves in the back seat by pinching a clothespin onto odd places like my mom's ear or the back of each other's arms. Though I was squished between two grown men, I couldn't pick two that I'd rather be rubbing sweaty shoulders with for two hours. 

We stopped to stuff our faces with fried goodness at a forever family favorite: Cap'n Jacks for fish and chips, fried whole-belly clams, scallops and greasy French fries. It certainly hit the spot - the perfect antithesis to my collard greens and rice cakes diet of late. 

Then it was to da beach. The weather was perfect - 80s, but a nice breeze so you didn't feel like a sweaty mess. Narragansett Beach was packed, beach chairs and blankets with scantily clad bodies packed in tight like sardines, but we found a spot and settled in. 

Michael and I headed for the waves, despite the bone-chilling temp of the water. I came to the beach to swim and having grown up on many years of cold Cape Cod waters each summer, I know the trick of a quick dive under the water to shock the body into adjusting to Atlantic Ocean temps. I LOVE body surfing. Anticipating the right wave and timing it perfectly so that you ride the crest all the way in, then getting your body wrecked as the wave crashes and forces you into the sand is one of my favorite activities. 

I had my white bandana tied tight on my head to block the rays and not freak people out. I don't know what made me think that would stay on. It's been raining like crazy for weeks so the ocean was particularly tumultous. After the first wave took me under that sucker was long gone. Suprise everyone! Bald girl riding the waves. 

"I'd rather you lose your bandana than your top," says my brother after I muscle my way back out to him at the wave break line. True that, I thought. 

After a walk with Craig to the breaker it was max and relax time. Surrounded by my favorite people in the world I spread out on the Mexican blanket and fell asleep to the sounds of my mom and dad talking and Craig and Michael tossing the aerobie. So content. 

Then we mozied back to reality stopping for ice cream and iced coffees then take-home pizza along the way. 

My belly was full. My heart was happy. My skin tight from the salt and sun. My bathing suit and bottom full of itchy sand. A perfect summer day. 

Unfortunately, I know these feelings won't last. After Wednesday it'll be several more days before I can think about body surfing again. Wednesday is going to be a very big day. At 7:15 a.m. my mom and I will be at Jefferson Radiology to have my port-a-cath surgically placed in my chest. I had a consultation today which helped calm my nerves some and helped me to better understand the great advantages of this creepy little device. From the "twilight" state I'll be in after the port insertion, it'll be a drive over to the cancer center where I'll jump right into my sixth chemo session ... this time through my newly minted port. If all goes well, the whole process will be faster and there'll be no pain from needles or the drugs themselves. Thank God I have my mom to make sure I make it to where I need to be and get through the day in one piece. It's sure to be a woozy whirlwind. 

Just Say No To Hairballs

When Sammy brought over her slobbery tennis ball for me to throw and wrapped around it was a big wad of matted hair---my hair---hanging off it and her pink tongue I knew it was time to end this slow, painful, hair follicle dying process. The fistfuls of hair strands showing up everywhere were just too much to handle, my weak scalp tingling and burning was getting just too painful.

My sister was coming over to hang out so I called her and asked her to bring some hair cutting shears. Yes, I asked my sister who body checks unsuspecting victims on the rugby field to come over with a sharp object to attack my head with. She ripped it out when we were little so why not cut it now? In all seriousness, I wouldn't feel more comfortable with anyone else doing it. 

I was still wavering on what I wanted to do as I was running my hands through what remained of my hair and coming out with more and more strands wrapped around my fingers. Kristen and Craig convinced me that in a situation where I have no control over anything, this was an opportunity to take control. It was falling out no matter what, so why not speed up the process and make it more bearable? "Fine. Let's do it." But I would only do it if they would first cut me a mullet. 

So I cranked up some Dave Matthews and we set up a mock barber station on the back porch. Craig pulled out the extension cord and the buzzers and Kristen got the shears ready. It started with the snip of a ponytail and it it all went down, er, came out from there. Check out the evolution of my spotty, mangly, thinning long hair to my new chic bald 'do --- with some business in front/party in the back and classic braided rat tail action in between. I only wish we had shaved in racing stripes. 

My scalp feels free and my head feels liberated. It's now much more bearable to watch tiny stubbles fall to the pillow as I continue to bald than drowning in a sea of choking, long locks. Bald is beautiful. It'll just taking some getting used to the fact that I'm the one who's bald. And bonus, Craig and I look like twins. They say the longer you're married the more you start to look alike, right?