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. 

A Comeback?

I think I might be making a comeback. A slow, gradual comeback for sure, but I think it's happening. I no longer feel the dragging, debilitating aches and weakness of the past two weeks. I can move my legs, my arms, my fingers, my toes without sending my heart into overdrive. I can walk up the stairs without my quads aching and without having to sit on the landing at the top to catch my breath. My nose is no longer as attune as Sammy's which means I am no longer nauseated by every scent lingering in the air. I can get through a day without crying in pain or just pure frustration and exhaustion. There is still lots of room for improvement, but I believe I've crossed the valley and am on my way back up toward the peak of the next hill --- BEAM chemo.

I hit a very low point, the lowest I have ever been during this entire year, and have been riding that low wave truly without interruption since I started this DI-CEP chemo just under two weeks ago. For the first time I can confidently say that I was completely helpless and conceded. I couldn't do my daily walks and even stretching was exhausting. I've had no appetite and no energy to make my own food. By some stroke of kismet, Craig was off from work on April school break so I had him home to check on me, to bring me food, to bring me to all my appointments, to be my arms and legs and to console me when I couldn't slow my mind down and couldn't keep my emotions in check. But the weakness spilled over into the next week and I had to call my mom to come over early to help me to get something prepared for lunch and drive me to the cancer center. This chemo bout has taught me (finally) to ask for help and to say what I need and don't need. When you have essential no white blood cells (I got as low as 0.1) and your hematocrit is dangerously low leaving your body deprived of oxygen in its blood stream, pride is kind of thrown out the window. I would have let a perfect stranger bathe me if it met I didn't have to stand woozy in the shower.

But I came out of it, with the help of all that support and all the encouragement that I receive from the amazing people that I have in my life. Holy crap there were days that I did not think I'd ever feel like myself again, but again I'm amazed that now I can see that this too will pass on a very near horizon. My appetite is coming back and so is my regular sleep pattern – huge strides. And, most importantly my blood counts are making a comeback. Again, much credit must be given to my spongy, young bone marrow. I should never have doubted it. Also, a shout out to the O Positive blood donors out there whose cells are helping supplementing my own.

Craig and I spent 10 hours in the hospital on Saturday where I received two units of red blood cells and a unit of platelets to help me recover. After the platelets were sent through my port, I felt scattered hives start creeping up around my body. They'd be crazy itchy and then rise up as little bumps. One on my chest, then my head, then my back. I tried to pretend that I didn't notice as we both wanted to get out of there so badly and this was the last bag of blood, but I knew better. Once the bag had finished I told the nurse that I had developed some hives and when she saw them I got a figurative slap on the wrist for not calling her immediately. Now it meant more Benadryl and another hour for them to monitor me. I hate Benadryl. After it made me see the usual stars, I passed out sleeping. Woke up with chest pain and an EKG was ordered ... we thought we would never get to leave. But my nurse was fantastic and did everything she could to help get us home - including bringing me right into the nursing station for the resident on rotation to examine me there and look at my EKG results and see I was otherwise ready to leave. That was so much appreciated.

I've had to go back to Hartford Hospital every day since to get my blood cell counts checked but have not needed anymore transfusions. Today, my white blood cells more than quadrupled from 0.6 yesterday to 4.5, which explains the wrenching pain I had in my lower back and hips this morning - the biggest concentrations of marrow. The stem cells are beginning to transform into the cells I need and the Neulasta shot from last week is finally starting to kick in. My red cells are continually climbing, slowly, so my fatigue is starting to diminish, but my platelet levels are still diving so I have to be very careful with any bleeding. Teeth brushing was a blood bath this morning and last night I bent a nail low and the entire thing pooled with blood without the sufficient amount of platelets to help it stick together. They told me no hang gliding today.

As one nurse put it "the chemo is killing everything from your mouth to your anus," which explained why my gums were pulsing and sore with that just-flossed-for-the-first-time-in-months feeling and why my "anus" continues to be a point of sore contention. As my counts recover, the achyness is subsiding.

Like a germinating seedling, my roots are finding their footing on the ground again and my layers are starting to open back up and reach toward the sun. I'm still very fragile, but slowly, with enough tender, loving care, I can now see that I WILL be whole again and ready to take on one. more. round.