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.

Hairballs

For nearly two weeks now I’ve been waking up with mouthfuls of hair being inhaled throughout the night from the pile of brown curly strands that’s been decorating my pillow.

The day after my most recent SGN-35 treatment I felt it happening; I could literally feel my hair follicles letting go and dying off. My scalp very suddenly burned, tingled and became itchy, and when I reached up to soothe it, my fingers returned wrapped in dark strands of hair.

Watching this process slowly happen has been defeating and quite frankly, a little devastating. I never expected to lose my hair with this drug as it is supposed to be so targeted toward the CD30 markers that reside in the Hodgkin lymphoma cells that it wouldn’t have the capacity to bother with fast-growing hair cells.

Affairs of the Hair

I hit a major milestone last week. I got my hair cut. I'm defining the word "cut" liberally here, but I did actually go to a salon, get my hair washed and shaped. It was quite a different experience than my old days of my long hair being slathered in goop then folded into pieces of tinfoil all around my head, long periods of time spent under the dryer with a magazine ... and all of that before the cut even started. But it still had all of the relaxing benefits time at the salon can provide. It was a very proud moment for me and my hair follicles.

I have completely lost my hair and grown it back, twice. It's gone from bald to stubbly to scruff and all of the stages in between several times over. But this has been the first time since all of this began that it's grown back enough to warrant a shape and to almost, almost pass as an intentionally cut hairstyle. I was just about there around Christmastime last year and was able to style a mini faux hawk but that all ended with my first shocking relapse and is quickly as it grew in, it was that quickly gone again.

Entering the salon, I was wary. My stylist had most certainly thought I "broke up" with her long ago as I hadn't been back in 15 months. Granted I've broken up with many a stylist in the past but I really loved her. I didn't know how I was going to broach the subject of my absence: "It wasn't you, it was me ... " wasn't exactly apropos. Plus, I look like a completely different person since last time she saw me.

Turns out that wasn't a worry. The salon had made a donation to the golf fundraiser our friends put on for us and the day before, the local paper had arrived which contained a post-event story and included a detailed account of my cancer journey. She knew everything before I had to say anything. No need to break the awkward ice.

Before we started hair talk, she pulled out a stool and sat right across from me and told me just how stunned she was as her eyes welled. She's only a few years older than me. She had read theSimsbury Life article, saw my name on her schedule and looked back realizing that in fact the last time she saw me was in May 2009, the same month the article indicated I was diagnosed in. I explained that yes, just one week after I saw her for a cut and full highlight I was diagnosed with cancer. Two weeks after, I shaved my head. The tears that filled her eyes said everything then she popped back with: "Well, I've worked with post-chemo hair many times before ... and don't worry, you're hair will calm back down again."

My hair had started to creep into a clown wig style fro. After a recent doctor visit when I had to face a mirror while waiting for the doctor to enter the room, I explained to Craig: "If Lionel Richie and Justin Timberlake had a love child, this is what its hair would look like."

On humid days especially, the super tight curls were getting out of control. They didn't bother me on the top so much, but I had no idea how to tame the sides. The curls were even creeping down the back of my neck creating something beginning to resemble a kinky mullet – frightening. I needed help. I adore ringlets on other women, I've just never before had to maintain these sprouted objects. Well, except for that bad spiral perm circa '92.

With that mission in mind she started by washing my hair, which felt so, so nice, especially the head massage she gave me while rubbing in the conditioner. Then out came the scissors and the buzzer. It was a bit saddening watching the little ringlets of hair fall to the floor after they had worked so hard to sprout. In early July I was completely and utterly bald, including eyelashes and eyebrows. It amazes me to think about the progress made in just over three months and no matter how differently it grew back, I love every strand of it.

She shaped my sides and taught me how to use a wax to style it and to tousle the curly beast on top. I actually got choked up when she gave me a hand mirror to hold and spun my chair around to view my new style from 360 degrees. To an outsider the change was subtle, but to me, it made a huge difference. I didn't look like a post-chemo patient. I looked like a chic, hip, modern woman.

"It looks almost like I did this on purpose," I said, smiling.

She laughed and agreed that we are getting there. She didn't charge me for the cut. That got me really emotional and I gave her a big hug.

I walked into our front door at home completely beaming.

"Wow, what are you so happy about?" says Craig, not noticing the before and after difference. This is the same result I'd get after two hours in the salon chair and it made me laugh.

Months back Craig said to me: "I don't even notice that you are bald. I don't notice your hair. I just look at you and see you." I do my best to do the same. I think this is why I haven't worn my wig since the cruise we took late June. It's just not me and I can't get comfortable with it. But for that time and those moments it was right.

I can't get too used to this current look though. I will lose my hair yet again with the next transplant. But for now, it looks, dare I say it, cute. However, I've lost my eyelashes again and my eyebrows are barely hanging on as a result of the Bendamustine, but beggars can't be choosers. When this is all over I could care less whether I'm left permanently hairless or having developed Werewolf Syndrome if it means I'm still here.

Hair – A Retrospective of the Past Three Years:

Hair Today, Gone Tomorrow

The hair that finally grew back enough to cover my head after the ABVD chemo treatments is now gone. My scalp just couldn't hold onto it. The follicles opened up and out it came, like my head was making an offering to the chemo Gods.

It happened real fast, exactly two weeks to do the day that I had my first day of ICE chemo - exactly as Dr. Dailey had predicted. It started with a familiar scalp tingling on Sunday - tremendously itchy and throbbing. Then Monday the hair cascade began. Tuesday my scalp ached with that feeling you get when you've had a ponytail in too long or when your hair's been tied up tight in a bun with jabbing bobby pins for a dance competition. It's the feeling when you let your hair unravel and then rub your scalp to let the circulation back in - it hurts to touch it and to move the hair around, but you can't stop doing it. Or at least that's me anyway.

Tuesday morning I woke up in a nest of short, dark hairs that covered my pillow. Disgusting. The shower was worse. The water added weight to my hair that my scalp just couldn't hold on and out it came in thick, black clumps. Enough hair to coat one of those creepy hairless cats. Much Drain-O needed. All day yesterday hair fell out at the slightest touch and the ache in my scalp only increased.

As soon as Craig got home he looked at the fistfuls I was pulling out and we both knew what had to be done. Out came the buzzers again. I can't just sit by and watch hair pile up around me. It was time to take matters into my own hands. So Craig took me up to his workshop and buzzed it to the shortest length - after a little fun with some mohawk sculpting. My scalp was immediately relieved and I felt freed. I really don't mind the G.I. Jane look and Craig actually prefers it (or so he says.) I didn't have time to get attached to the crazy curled, dark brown hair that had grown from November to now so it wasn't nearly traumatic as it was parting with my long, blonde locks last May. It's just strands of fibrous protein anyway.

This morning I woke up to a pillow with a case of five-o-clock shadow. The stark white of the pillow case was contrasted by a healthy amount of little black stubble. It won't be long until I move from G.I. Jane to Mr. Clean.

Chemo goes after all fast growing cells, hair cells being some of the fastest, so it only means that the chemo is on the attack. I can only imagine that the cancer cells are leaving my body just as quickly as the hair is leaving my head.

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?