Finishing Up Round 3

 This is starting to get old.

I’m ready to be done with all of this. There are so many other things I’d rather be doing this summer, but here I am, doing this instead.  I should be grateful that I’m getting the help I need, but man, this is a slog. I’m just about halfway through the DA-EPOCH-R treatment cycles and when those are done, I’ll have two more shorter 3-day hospital stays for the IV methotrexate therapy administered to stave off the spread of my disease to the central nervous system. That puts me into September, before things start to get somewhat normal again. Sigh.

I try to make my room look homey.

The collage on the wall is made from
cards I've received from friends.

My friends have been so great through all of this.

Several days after I was home from my Round 2 hospitalization, Bonnie organized a 2-day back yard clean-up event at my house. Ten of my neighbors came over for a 2-hour marathon clean-up effort one very hot afternoon and another six came the next morning to finish the job. They power washed the screened-in porch, deck rugs, and furniture, strung lights, mowed, weed-whacked, stacked wood, planted flowers, and carted off trash and donations.  I was still feeling the effects of chemo so, aside from answering questions about where to find or put things and fetching things they needed to get the job done, I sat around and watched and just that was exhausting. This was a huge effort made much lighter with many hands. It then rained for a week straight, so I haven’t really had time to fully enjoy their efforts, but hope to have a gathering back there in the near future. As summer approaches, it will be nice to soak up some rays, light up the grill, and sit by an evening fire.

   

Cancer-survivors have reached out from far and wide.

Over the past month, many friends who have kicked one kind of cancer or another—sometimes even two— have reached out to me with words of wisdom, products they found useful during treatments, and stories of hope and survival.  It’s been a good reminder that there is another side to this journey and that cure is still within my realm of possibility. Sometimes that hard to see from where I'm sitting.

As my symptoms started to subside and I regained some energy, I got busy getting my dad’s house ready for staging.

I brought a carload of boxes containing the last of my parents’ important documents, pictures, and slides back to my house to go through. In one of the boxes, I found my dad’s mother’s death certificate, confirming that she’d died of “Lymphosarcoma”, which is an outdated medical term for Non-Hodgkin’s Lymphoma, the over-arching category for the many variations that now exist. She was just 60 years old and died the year before I was born. I knew that she had lymphoma, but seeing it in black & white, on a death certificate no less, was a bit shocking. In that same folder, was a pile of bills from her last couple of months spent in the hospital.  I was also shocked to see how inexpensive it was to be treated and hospitalized for this disease in 1966, although I’m sure it seemed pricey to them at the time.  Let’s just hope that all of the scientific breakthroughs and new meds developed over the last 60 years work in my favor.

Dad’s house sold in just 2 days!

Now that the house is under contract, I’ll be devoting some of my next home days to getting the rest of it cleared out and trying to sell most of the furniture, artwork, and housewares that I spent the last six months purchasing for what I thought would be a furnished rental unit.  Best laid plans…

I enjoyed visits from out-of-town family and friends before I headed back for Round 3.

Two cousins from San Antonio, Judy and Justin, came for a 5-day visit the last week I was home. My sister drove them from her house to mine, so she stayed a night as well. That was a lot of people for my little house, in my current state, so Bonnie came to the rescue again and hosted them up the street at her house. The chilly rainy weather was not great for their visit but we got out and about anyway. We saw a play at Live Arts, went thrifting to get them some warmer clothes, visited the Swords to Plowshares civil war statue “recast and reclaim” exhibit at the African-American Culture and Heritage Center, toured Monticello, had a game night and saw some live music at the Batesville Market.

Game night with Judy, Justin, and Bonnie

Traipsing around town

I usually spend Memorial Day weekend at a music festival down near Martinsville, but since that wasn’t in the cards for me this year, we were also able to attend the Batesminster Dog Show, a farcical and fun canine event arranged by some of my closest friends and their furry sidekicks.  Friends from Philly, Priyanka and Sid, came down to attend and some other local friends and their dogs joined in the fun. It was a delightful afternoon.                                            

Wylie, Best Dog on Wheels

  

At The Batesminster Dog Show

  
  

 

Dilly, Best Midfield Pooper

Best Wig in Show ;-)

Judy and Justin took the train back to DC last Tuesday to spend a couple of days in the city before heading back to Texas. I spent the next two days swapping out furniture and bringing more boxes home from dad’s house.

Texans on the train

Then, the Sunday Scaries set in.

Have you ever experienced the anticipatory dread and anxiety that occurs when the weekend winds down and the workweek approaches? I seem to get this feeling a couple of days before heading back to in for treatment, knowing that I’ll be confined to my hospital room and hooked up to Ivan for another 6 days then feeling all the things that go along with toxic excretion for the next week or so. It really puts a damper on those last few days at home because it counteracts the upswing in my physical well-being at that time. As it turns out, the Sunday Scaries are not limited to Sundays.

Round 3 was riddled with delays and some added medications.

My pre-admission oncologist appointment last Thursday was delayed a couple of hours because the nurses, including the port whisperer who eventually had to be called in, had a hard time accessing my port. This meant that I got placed at the back of the line as my doctor’s other patients snuck in front of me. Then, my room wasn’t ready until late in the evening, setting the stage for an unfortunate IV schedule that had me up at all hours of every night as they changed bags. As the dosages of my chemo increase with each cycle, we added a new drug to the mix to prevent bladder damage from the increased cyclophosphamide. This new drug requires an 18-hour infusion.  Despite the hiccups and delays, I will be getting out of the hospital this evening.  I am so ready to be home and to get some solid sleep in my own bed. I’m also excited to see another cousin who's driving in from Saint Louis this week.  The weather looks fantastic for his visit.

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....

Post-Chemo Recovery

I finally tolerated the Rituximab.

The third attempt at the Rituximab administration was a success. They opted for the slow-roll that meant keeping the drip steady at the lowest possible rate for 12 hours. The decision was made early in the day on Wednesday, but because of the delay, the original bag of elixir was about to expire so the pharmacy had to make a new batch.  All of these things take time. I kept watching the clock and doing the math to determine how much sleep I might get that night.  If they got it in by noon, the drip would end by midnight and I might get a decent night’s sleep.  They got it in at 4pm.

I went home on Day 8.

Once the infusion was complete, in the early morning hours, the nurse pushed through a final bag of saline then detached me from Ivan.  Ahh, it felt good not to have to drag that pole around whenever I went to the bathroom and to be able to change my shirt without having the nurses disconnect everything.  The vascular team removed my PICC line (good riddance!) and the nurse administered a shot of Neulasta in my belly to promote white blood cell growth and prevent febrile neutropenia.  That was the last procedure that needed to be done to complete my first cycle, so I packed up the CLAX and waited for my ride.

I have these little bursts of energy and then I crash.

Bonnie picked me up from the hospital and we made a run to Costco to fill a prescription that they didn’t have at the hospital pharmacy. It was a beautiful day and it felt so good to be out of that room. I had a little burst of energy for the first few hours that I was out and settling back to life at home.  Then, the exhaustion kicked in. That first afternoon at home, I took a three-hour nap, tore through a bunch of food that my neighbor Faye had sent over, went to bed early, and fell into a deep, beepless sleep in my own bed. I awoke Friday, with significant bone pain (a side effect of the Neulasta) and a strange muffled hum in my ears. I was so fatigued, just tired to the core.  I joined some friends at a dinner party up the road for a few hours before wearing out and heading back to bed. Saturday, the headache sunk in and it was a doozy.  I spent most of the day on the couch wondering if these symptoms would ever go away and if my body would ever feel like my own again.  The fog finally lifted on Sunday afternoon just in time for several drop-in visitors. The headache still comes and goes, but it’s not as debilitating as it was.

The at-home meds to get me to the next cycle

I have a hard time accepting help.

My friends worry about me being at home alone. I’ve spent a lot of time alone in my life, so it’s not a new state of affairs for me, but I understand their concern and am trying to respect their need for me to communicate that I’m alright. I’ve started texting three of my friends, who I’ll affectionately refer to as “the hawks”, each morning (and evening, if I remember) to let them know that I’m okay.

I’ve found that if people ask me if I need anything, I’m apt to say “no”—I mean my basic needs are met, and I am well-versed at taking care of myself.  However, when friends have said, definitively, I am coming over with a [fill in the blank] (e.g. batch of cookies, a quart of over-night oats, some mac-n-cheese, a sheepskin wig), I’m more likely to say, “okay, thanks.”  Please don’t take offense if I don’t immediately accept your offers of help, try again more assertively. I suspect that with each cycle of treatment, my recovery time will be longer and harder, my needs will be greater, and I’ll be less able to resist your acts of kindness.

"This might come in handy when you lose your hair."

Cycle 1 - A Little Longer Than Expected

Yay!  I don’t have a brain tumor!

What a relief. The MRI results came back just moments before they wheeled me down for the intrathecal lumbar puncture chemotherapy treatment on Tuesday morning.  I barely had time to process this good news before being consented for the procedure in the Interventional Radiology unit.

I was not a big fan of the lumbar puncture treatment.

The central nervous system is a protected area of the body for a reason. The cerebral spinal fluid (CSF) surrounds the brain and spinal cord to provide a shock-absorbing buffer, so changing the volume of that fluid creates pressure changes at the core of your body. For this procedure, they took 7ccs of CSF fluid out and put 10ccs of methotrexate in. I was nervous going into the procedure, especially after the PICC line placement mishap last Thursday where they hit a nerve guiding my IV tubing in and I remember the unpleasant feeling of a spinal tap I’d had a few years ago as part of a clinical trial. That procedure left me with a feeling similar to what happens to your inner ear when you drive up in the mountains, but in the very center of my body instead.  I was not looking forward to it.

They told me that the needle being placed between my L4 and L5 vertebrae would not go deep enough to risk hitting the spinal cord but there was a small risk that they would hit a small floating angel hair pasta-like nerve and, YEP, they did.  Twang!! 💥😵

I had a lot of built up emotions going into the procedure and had just consumed another 100 mg of prednisone, so it shouldn’t have been surprising to me that I streamed tears throughout the entire procedure and cried for a good hour afterward.  It was a little surprising to the folks doing it, but they were kind and reassuring and gave me another box of Kleenex before sending me on my way.

My final treatment for this cycle has been far from smooth

They saved the administration of the Rituximab, a monoclonal antibody that attaches to a specific (CD20) antigen on the surface of my B-cell lymphocytes and flags it for destruction by the functioning immune system.  This drug is specifically helpful for the high-grade lymphoma that I have, but it’s a little tricky to administer because some people have reactions, so it needs to be closely monitored and its dose titrated over time. Of course, I was one of those people that had a reaction! I just can't seem to catch a break in that regard.  They started me at a low dose and came to check on me 30 minutes later.  My BP had plummeted again, I became extremely fatigued, and my throat was beginning to constrict.  They called the doctor and jumped into action.  They pumped me full of meds to address the reaction then tried again a couple of hours later with some preventative meds delivered ahead of time.  Unfortunately, this happened around the time of the evening shift change, so when my BP reading fell again, yet not quite as drastically, they decided to abort mission and save the next try until the morning when the attending was back on duty.

This morning, the doctor apologized and said that although this is a known reaction, it doesn’t happen very often and he was sorry it was happening to me and the poor lady three doors down. I'm in room 16 so I just we just refer to her as "13". It seems 13 and I are both here for our first cycle of the same treatment regimen and have both run into similar issues throughout our stay. I sent her a little note of encouragement through our nurse just now. 

The new plan is to restart the treatment later today with a very slow 12-hour drip time and a lot of prophylactic pre-meds to avoid a reaction. Of course, this will prolong my stay in the hospital one more night so I won't be sprung until tomorrow if all goes to plan.  Sigh. 

The kindness of strangers is so lovely and, in this case, somewhat amusing.

A young volunteer stopped by my room this morning and asked if I wanted a snack or a goodie bag.  Intrigued, I opted for the goodie bag and was highly amused when I pulled out the light reading material enclosed.

"Cowboy to the Max"  🤠😅

I am very ready to go home.

Cycle 1 - Nearing Its End

There are signs, signs, everywhere signs.

I’m half Mexican so, by nature, am a little superstitious.  I don’t often look for or see omens — the bad kind, but am blessed to see good signs on occasion.  This all started when my Mom died four years ago.  She had a lifelong love of daisies and so they’ve always reminded me of her. After she passed away, I saw them everywhere and not just the ones growing from the ground or arranged in a bouquet.  I’d notice them on someone’s scarf or tote bag as they walked by or on signs or billboards while driving down the road. They were just little reminders that her spirit still walks with me. When dad passed two years ago, he checked in with me occasionally through cosmic references instead — a crisp clear starry night or a bright super moon rising over my house. These sightings happened often in the months after each of them passed but then slowed down as they saw I was doing okay without them.  Recently, though, as I’ve been going through this confusing and emotional time, these signs have come back and not just from them.

When I first started going in for diagnostic tests, I went to Sentara Martha Jefferson Hospital for a CT scan.  I was on the elevator and accidentally pressed the button for the wrong floor. When the doors opened, there, staring at me, was a giant painting of some chickens that my dear friend Krista painted. She and I had not seen much of each other over the past year, nor did she know at that time that anything was going on with me, but seeing her painting felt like a sign. The following week, I went to the  UVA Health Center to get a biopsy and lo and behold, a triplet of Krista’s paintings welcomed me in the lobby. Another day, when I checked in for an Echocardiogram at UVA’s Fontaine Research Park, there was another of Krista’s paintings hanging behind the desk of the woman who checked me in.  Each sighting was like a much-needed hug from an old friend.

 Sentara MJ Hospital (artwork: Krista Townsend)

 UVA Health Center (artwork: Krista Townsend)

 Fontaine Research Park (artwork: Krista Townsend)

And, that’s not all.  Last Wednesday, when I went to get my MRI, there was a wall-sized photo of the cherry blossoms around the Tidal Basin in D.C. just outside the room where I changed into my patient scrubs.  This was surely a sign from my parents. My father proposed to my mother on a picnic blanket under these flowering trees on April 1^st, 1966, and they went back to visit them almost every one of their fifty-five years of marriage. I was born the year following their engagement, in December, but they named me April to commemorate that moment. Those trees are my namesake.

My parents got engaged just across the water next to the Jefferson Memorial

The next day, I had an appointment with my oncologist at the UVA Cancer Center, before being admitted to the hospital for treatments. As I was walking from one building to the next, I passed a giant photo of the Angel Oak Tree, a massive historic Southern live oak on Johns Island, near Charleston, SC.  I love visiting this tree on my trips to Folly Beach and it felt like a little “Stay strong, April” sign from all of my South Carolinian friends before I headed in for my first treatment.

Sending strength from South Carolina

Once I got settled into my room, I noticed that many of my nurses were wearing daisy pins on their name tags as part of a clinical skills, care, and compassion award campaign. Each time they come to my bedside it feels like a little visit from Mom. 

I hope these signs keep coming as I journey on.

This morning, I had a spa day.

Because of my PICC line, I’m not allowed to have a shower while I’m here so I’ve been doing the daily sponge bath to keep me clean + an extra daily antibacterial wipe down on all exposed skin to keep hospital-born infections at bay.  My hair, however, was starting to feel a bit greasy and neglected so the nurse suggested I try the Shampoo Cap.  This is a plastic shower cap lined with a thick, wet, scented cloth material with a no-rinse cleansing solution.  They keep these in the warming oven, so it felt wonderful massaging it into my scalp. When I read the label, I saw that these Shampoo Caps are made in South Korea.  I’m currently watching Season 2 of BEEF on Netflix (a must-see, if you haven’t already) which has a lot of K-beauty product references and I remembered that I’d packed one of those Korean disposable face masks that my friend Michelle had given me when we were at the beach. So, I decided to make a spa day out of it. A little self-care goes a long way.

Beside K-Beauty Treatment

Likely, my last "good hair" day

Meanwhile, while I was primping upstairs, poor Billy Strings, who’d played a couple of concerts in town this weekend was recovering from surgery elsewhere in the hospital. He’d apparently broken his leg at the very end of his last show. According to his Instagram page (where I stole the pictures below) he said,

“Well, can’t say y’all didn’t warn me about screwing around on my skateboard!! Saturday night I walked off stage right before the encore. I was all zazzed up from a really fun show. I grabbed my board and tried to do a trick I’ve done a million times (back 180) and landed awkwardly and broke my leg. I heard it snap over the screaming crowd. Sounded like a damn 2x4. It’s been an interesting couple of days to say the least complete with the most extreme pain and crazy ketamine trips and operations stuff but the staff at UVA here rules. They screwed me all back together. They are absolute angels on earth.”  ~Billy Strings (04/20/2026, UVA Hospital)

Shot from backstage, just before it happened

...I think the ketamine just kicked in 

Like Billy, I’m trying to keep a positive attitude, but sometimes it all starts to feel real.

On Saturday, my blood tests revealed that I had become quite anemic so the doctor ordered a unit of blood.  He told me not to worry — that most patients on the oncology ward are infused at least once each cycle and that they actually use more blood on this ward than in the Emergency Department. I was feeling weak so was hopeful that this might bring back some of my energy.  When they brought the bag in, I took one look at it and teared up. Then I said thank you to the donor. My mother had been a Red Cross "O-negative Super-Donor" and my brother had donated organs when he died 12 years ago, so I don’t take the gift of life lightly. I got emotional about the whole thing and a little weepy ... and I think the prednisone kicked in again.

I actually got a fair amount of sleep last night, but woke up this morning with a splitting headache and Ivan the Terrible beeping in my ear.  The nurse ordered some Tylenol but we waited about twenty minutes for it to arrive. During that time, Ivan just wouldn’t let up and my head started throbbing. I felt nauseous and was hovering over an emesis bag. All the while, I was staring at the dry-erase board in front of me that reads “Waiting on MRI results” and I burst into tears. Was my head throbbing because the lymphoma had spread to my brain or is this just the beginning of the worsening side effects that I'm told I will feel incrementally with each cycle? This time, it wasn’t the prednisone because my morning dose was still sitting in front of me. Then, with a caring touch, my daisy-pinned nurse wiped my tears, wrestled with Ivan, gave me three Tylenol and an Ativan, then told me it would be better soon.  And, it was. 

One day, I hope to be better, too.