Descending Dysmorphia

 I had a little scare at home alone last week.

The day after my last hospital stay, I did a little too much when I probably should have been resting.  But, that’s all I do when I’m at the hospital—rest. When I’m home, I want to be out getting stuff done.  That day I went into town for a clinic visit, had coffee with an old friend, and then came back to Batesville to attend a friend’s book-signing event at the Market. As the evening wore on, I could feel myself fade. After the event, a friend walked me home and I quickly hit the bed.  In the middle of the night, I woke up drenched in sweat and stumbled to the bathroom, feeling quite nauseous and woozy. When I reached for the trashcan, I fell off the toilet and found myself lying on the bathroom floor wondering where I was. I managed to get myself up again and emptied myself out…from both ends. When the episode subsided, I made my way back to bed and quickly fell asleep. When I awoke the next morning, the memory of what had happened came flooding back to me and I said to myself, “Uh-oh, that wasn’t good.”

I reported the event to my doctor who suggested that I drink more water to keep the toxins diluted and then shot a text to the Lady Hawks, to let them know what happened and that I was feeling better. Bonnie insisted that I sleep in her guest room the following night. This really bummed me out. Not Bonnie’s guest room -- it’s lovely -- and not the fact that I have friends who are checking in on and are concerned about me, but the thought that my independence may be in jeopardy this early in the game.  Bonnie and I shared a lovely dinner and movie together and I got through the night without incident.

The next day, the bone pain kicked in.

The Neulasta shot I got at the clinic stimulates bone marrow growth, which promotes the production of neutrophils (white blood cells), all in an attempt to counteract the depletion of neutrophils that occurs with chemotherapy. This rapid production of neutrophils expands and increases the pressure inside the bones and that causes a significant amount of pain. I call it bone-crushing pain, but I suspect that crushed bones hurt even more. This pain lasts a few days and keeps my fatigue company.

Other post-chemo symptoms are also appearing and starting to bum me out.

My body feels weird in general, and when I look in the mirror, I don’t always recognize myself. Now that I’ve had two full rounds of toxic chemicals pumped into me, I’m starting to feel like my body is not my own. 

Unexpected weight loss was one of my early symptoms that alerted me that something was wrong and led to my diagnosis.  I had lost 12 pounds in just over a month. I’ve gained a few of these back, but have also lost a lot of muscle mass in the last few months. My arms are flabby, my butt is flat, and my feet have shrunk (I’m down a Birkenstock buckle hole).

While in the hospital, and for about a week after treatment, my skin smells funny. The toxins excrete through my sweat glands and I can also smell it in my pee. I’ve recently learned that chemo pee is not good for septic tanks, so I’ll have to do some additional upkeep on that that system. Who knew? I guess that’s one good thing about my long hospital stays is that my most toxic pee is deposited there.  Chemo farts are also a thing. Just saying, in case you're in my vicinity.

One of the drugs that’s included in my 96-hour intravenous cocktail is Vincristine. It targets rapidly dividing cells and has neurotoxic side effects. After my first treatment, I experienced nerve-related hearing changes and these have continued. Being in groups of people sounds cacophonous. Now, after my second treatment, I have neuropathy in my hands and feet, which causes numbness and tingling and makes me a little wobbly at times.  Unfortunately, these neurotoxic side effects will likely be permanent.

And, if all of that was not enough, chemo-brain is kicking in. The other two drugs included in the 96-hour infusion, cyclophosphamide and doxorubicin, cause a sort of mental fog, known clinically as cancer-related cognitive dysfunction. For me, I’m experiencing this as short-term memory loss, searching for words, forgetting what I’m doing, and a lack of concentration. It’s really disconcerting and, frankly, the combination of these symptoms is making me a bit irritable---or maybe that’s the prednisone?

Apologies in advance if I’m short with you, cancel visits, or come off as anti-social.  It’s just me, adjusting to these changes to my mind and body.

On the Other Side of Cycle 2

 I got a lot of good information prior to my most recent hospitalization.

I’m happy to report that things were a little less hectic for my Cycle 2 hospitalization. I knew what to expect and had already established a bit of a routine so I wasn't walking into the unknown. Thursday morning, I had labs drawn and met with my oncologist at the clinic prior to admission later that afternoon. We reviewed some recent fine-tuned genetic mutation results that came back since I’d seen him last and these confirmed my diagnosis of Stage IV, Double Hit B-Cell Lymphoma, further validating that I am on the right treatment course.  My bloodwork indicated that I’m tolerating the treatment well so he was able to increase the dosages of three of the chemo drugs by 20% this time. We will do this evaluation at each cycle to try to keep increasing the dosage.

These are what my type of lymphoma cells look like

I recounted my negative experience with the intrathecal (lumbar puncture) chemo treatment at my last hospitalization and asked the doctor if he would put me under general anesthesia for my next one. Just talking about the experience was so unsettling for me that I was tearing up recalling it with him. He offered an alternative that I quickly accepted. Instead of three more intrathecal chemo injections over the course of my next five treatment cycles, he could instead add on two more hospitalizations after I am through with these first six cycles. Each stay would be three days and I’d receive a high-dose of methotrexate intravenously through my port. Then, my blood and urine would be closely monitored for up to 72 hours to ensure proper drug clearance with rescue meds being administered, as needed.  Maybe other people would choose a one-hour procedure while already hospitalized over an additional three-day hospital stay, but not this girl.  That’s how much I did not like the intrathecal chemo experience.

We also discussed what the next steps would be if the cancer relapses after this first round of treatment. My oncologist respects my informed and curious approach to this disease so he didn’t give me the “we’ll cross that bridge when we come to it” spiel. Instead, he provided me with the information I wanted to know.

1.      First, we’ll determine if my current treatment is working by doing another PET scan sometime in June, between my third and fourth cycles, to see if the tumors are shrinking. That would be a good sign. After the sixth cycle, we’ll do another one to see if they are gone. That’s the goal.

2.       If my post-treatment PET scan is negative (showing no visible tumors) then the next standard course of action would be to wait and observe to see if any symptoms return or biomarkers reappear and do periodic PET scans over the course of 5 years.

a.       If the cancer relapses during this time, the standard treatment option would be CAR-T therapy, a fairly new procedure that involves removing my white blood cells through a process called apheresis, arming them with a chimeric antigen receptor (CAR), then putting them back in my body.

b.      There, these armed cells will start to multiply then seek out the lymphoma cells like heat-seeking missiles and attack them. It’s pretty cool and I’ve been watching this technology develop since before it was approved by the FDA in 2017.

3.     That said, he also discussed a new clinical trial that I may qualify for which sounds intriguing and involves prophylactic use of an investigational off-the-shelf CAR-T cell therapy derived from donor T-cells.

a.       To qualify for this trial, my post-treatment PET scan would need to be negative (showing no visible tumors) then I would agree to be pre-screened with an investigational lab test to evaluate the presence of minimal residual disease (MRD) which identifies any remaining DNA mutations that may significantly increase the chance of my lymphoma returning.

b.       If the MRD is positive, I can enroll in the trial where I would be randomly assigned to a wait and watch arm (the standard of care) or to receive the off-the-shelf donor CAR-T cells prophylactically with the intent of preventing a relapse.

It’s good to know what next steps are available, especially since this highly aggressive form of lymphoma often relapses. Knowledge is power.

This hospital stay itself was much easier.

I had a few hours to kill before being admitted to my room, so I visited the Flourish boutique where I was fitted for a cranial prosthesis (aka, a wig) then I caught up on some reading and had lunch. My room this time had a similar view as the last time with the mountains in the background, but with the addition of a not-so green roof in the foreground. Ivan (my IV pole) was not as terrible over the course of my six-day stay and he gave me many extended hours with minimal beeping. He did, however, have a few tantrums especially when one particular nurse was on duty.  I’m not sure what that was all about, but she kept him in check. 

Eventually the roof did finally green up

 

I tried to make friends with Ivan

Because I’m in the hospital for such long stretches, I’m getting to know the nurses, techs, and hospitalists that rotate through to care for me. Yesterday morning, the hospitalist came in with a smile and said, “I was so happy to see that you were on my rounds this shift.”  He probably says that to all the patients, but he seemed sincere, and I was feeling the same. He was the one who got me through my BP crashes during my Rituximab administration at my first visit so I was relieved that he would be the one to navigate this next one with me. We did much better this time and I was able to titrate the dose up three levels before my BP crashed again.  When it happens, I get pale and really sleepy but am still conscious and able to talk.  My nurse hadn't seen me do this before, so when it happened, she went through safety orientation questions with me. “Can you tell me your name? What month and year is it? Do you know where and why you are here?” I was answering them all correctly, but at the same time I was quietly cringing that she might ask me who the current President is. That might have sent me crashing again, ha! After pumping me with a bolus liter of saline, we took the dose back one level and finished the bag out at that slower rate. This delayed my release a few hours, but I got home when the sun was still out and was able to have a relaxing evening before crawling into my own bed for a night of uninterrupted sleep.

I am so thankful for my tribe.

People from my past and present are showing up for me in beautiful ways, reminding me of the special friendships we’ve sustained over the years. These are just some (not all) of the acts of kindness shown to me this week.

• I have several out-of-town guy friends, Steve in Pennsylvania, Tom in Puerto Rico, and Ben in Italy who shower me almost daily with beautiful flower, water, and nature photos
• Patty and Chris, installed a mini fridge on my back porch for neighbors to drop off meals and packed it full of nourishing goodies just before I got home.
• Malika watered my outdoor plants, took in some mail, and babysat the new annuals that I didn’t get a chance to plant before leaving for the hospital.
• Jason & Maryline (of The Pollocks) invited me to dinner for a private listening show of their new album just before I went back into the hospital since I was going to miss their public show at the Batesville Market.
• John and Hannah Catherine brought a Friday night party to my room complete with nachos, a guitar, and much laughter.
• Bonnie and Sam met with my realtor and cleared some stuff out of my dad’s house
• Deb stopped by on her way out of town to bring me a Ben & Jerry’s non-dairy milkshake
• Jason S. visited on Saturday morning with a hot Americano and a bag of decadent pastries from Marie Bette
• My step-kids, Elliott and Emily drove from Richmond for a Mother’s Day visit and we had a fun and tasty picnic in my room
• Sharon brought be a bowl of kosher matzo ball soup for lunch one day.
• Sally made an emergency run to the store to replenish the stock of fragrant soaps I’d brought with me to the hospital give away to the nurses for Nurses Week (they loved them).
• Jane and Emily sidestepped the “no flowers on the oncology unit”* by sending me non-biologic flowers.
• Bonnie and Leslie tag-teamed my ride home and hauled the CLAX with all of my things back into my house.

                                                

                            

People have asked, so I inquired what this no-flowers rule is all about and was told that there are several reasons. The bacteria in soil and flower water can cause infections in immunocompromised patients, the smell of flowers could bother patients whose sense of smell has been altered by chemo, and flowers can quickly wilt and die serving as a sad reminder of the patient’s illness. Damn, that last one is dark! I’m almost sorry I asked.

Flowers that won't die

I’m getting used to this no-hair thing.

One thing I worried about when I knew my hair would fall out is how I would manage daily life without my faithful stim. I’ve been a hair twirler since I was a little girl and it used to drive my family crazy. This self-soothing action has been helpful at managing my stress and anxiety through the years so I've embraced it. Without the hair, though, I've got nothing to twirl. I think wigs are going to do the trick.

Caught myself hair twirling in a
shadow selfie once

The kids playing with my hat wig

I've always wanted
Cher hair

Apparently, King Louis XIV had a special room at Versailles filled with cabinets for his many wigs (ses Cabinet de Perruques). My mother also had an impressive collection and she used to delight in wearing her wigs to surprise people when picking them up at the airport or showing up to parties in disguise. I’m very glad that when she passed away, I couldn’t bring myself to part with her collection. I think they’ll come in handy this year.

Les perruques de ma mère

Channeling my inner clown

I’ll be home for the next 2 weeks, then back in the hospital for Cycle 3 on the 28th.

I suspect that I’ll feel quite fatigued for the first several days I’m back at home and will try to take things slowly.  That seemed to be the best course of action the last time.  Once I get my energy back, I hope to get outside to enjoy the spring weather I’ve been watching through the windows. I have several friends and family coming in from out of town next week which is something to look forward to.

Hope to see or talk to some of you while I’m on this break.

Hair Today, Gone Tomorrow

I’ve had an entire week of feeling fairly good.

After my return from the hospital from my first round of chemo, I spent four days on the couch with muffled hearing, headaches, and fatigue. I cancelled most of the plans I’d made because I just didn’t have the energy. Then, just as I was starting to feel human again, the pain in my abdomen returned with a vengeance. The doctor agreed that the high doses of prednisone I received in the hospital had likely masked my pre-treatment pain, but it was clearly wearing off. I asked if he’d put me on a low maintenance dose of prednisone but he didn’t think that was a good idea. Instead, he sent me a message through My Chart that he’d called in a prescription for Oxycodone.  As I read this, I was literally listening to a story on NPR about the dissolution of Perdue Pharma (the makers of OxyContin) as part of a settlement reached regarding their involvement in the opioid epidemic. It felt weird to take this very similar drug knowing how addictive it can be, but I caved to the pain, as I’m sure many before me have. Luckily, just one dose seemed to have done the trick and after a loopy evening on the couch, I woke up feeling good the next day.  That was eight days ago, and I’m still feeling okay. It’s good to know that just one dose of that medication brought relief and that it is now in my arsenal for the future.  Pain is no fun.

I’ve been making good use of my new-found energy.

In the midst of this health crisis, or more likely because of it, I decided to sell my dad’s house here in Charlottesville. My parents had purchased the house just four years ago in hopes of aging in place closer to me.  Unfortunately, mom passed away three days after arriving, and dad two years after that. Dealing with the house and their belongings over the last two years has been emotionally taxing. I spent some time and money making some needed improvements, emptied the house of most of my parents’ things, and then freshened it with new paint, furniture, and kitchenware in hopes of doing a furnished rental. Then it sat there for months and months, waiting for me finish the few remaining punch list items before renting it.

While I was laying in the hospital last month, I decided the best thing to do would be to sell it and my friend Bonnie offered to help me with some of the legwork needed to do that. So, while I’ve been feeling good this past week we got busy. We met with a realtor, organized the remainder of my parent’s things in a storage closet, and moved out some of the older furniture to get ready for staging. My friends Rebecca and Cleveland drove down from DC on Sunday to help, and Bonnie and her son Sam assisted me with the last big lift on Monday.  Yesterday, we met the realtor and three contractors to schedule some painting, landscaping, and plumbing that needs to be done before we can list the house.

I am thankful to have had the energy to do all of this before heading back to the hospital, but have been pretty worn out at the end of each day.

They said I’d start losing my hair 2-3 weeks after my first treatment and, sure enough, I did.

It started happening in the hospital. Whenever I got up to use the bathroom, I would unplug Ivan (my IV pole) and notice a lot of hair on my pillow.  I’ve always been a bit of a shedder, but this was way more than usual. Last week, just as the pain was receding, the rate of shedding increased dramatically.  Anytime I touched my head, I’d pull away a handful of hair. I trimmed it into a bob, which looked cute and made it look less scraggly. I thought I could get away with just that for a while, then, one evening, while washing my hair, it started coming out in clumps. I jumped out of the shower with the water still running, got the scissors, and started cutting.  It felt kind of empowering to take control, but it was a real hack job. Luckily, I’d planned for this and had already arranged for my friend Michelle, who sports a very fashionable cropped ‘do’, to bring her clippers out on Saturday for “the big shave.” Armed with glasses of rosé, we sat on my back porch and took the rest of it off.

                                   

 

That evening, I went out to see my friends The Pollocks play a gig at the tasting room where I used to work and they all said that I rocked my new look.

So I said, “Well, then let’s rock it!!”

I'm also rocking a new half-wig, called the Hustle Wig, which is clearly meant to be worn under hats.

         

I head back to the hospital for my second round of chemo tomorrow.

Today, I had day surgery to place my port. It’s called a PowerPort, which you’d think would make me feel like a super hero, but instead I feel more like an EV. I’m hopeful that it will ease the burden of the IV drug administration and multiple blood draws I’ll be receiving over the next three months and will be more comfortable than the PICC line I had before. I’m happy to report that, aside from the whole process taking longer than expected, the surgery was quite uneventful.  Tomorrow morning, I go back to the Cancer Center for labs and an appointment with my oncologists and then I’ll be admitted to the hospital in the afternoon. I will most likely be there through Tuesday.

     

Tomorrow will be busy, so beginning Friday, I’ll be open to visitors. If you plan to come see me, remember to bring your ID for your visitor’s pass. If they may ask from my birthday, just text me and I’ll send it to you. Also, please note that they do not allow flowers on the oncology wing. Please give me a text before you head over to confirm that it’s a good time.

Now that I know what to expect, and my doctors are prepared for how I may react to some of the medications that gave me trouble the last time, I’m less nervous about this hospital stay. They say that my recovery time at home may take longer with each treatment cycle, so I will plan for that and not try to take on too much too fast.

Here we go again....