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.

And so it begins

 I am definitely feeling the love.

Earlier this week, my sister, Robin, came down for a pre-hospital visit and on Wednesday evening, my friend Michelle took me for an MRI, where we got “Patty-arranged VIP hallway seating” again. On Thursday morning, Sally got up early (yet again), to take me in for my first round of treatment.  Since then, I’ve received lots of phone calls and texts, had a handful of visitors, and was even serenaded from the mountaintop outside my window where some friends were at a show. Shout out to Ian Gillam and the Fire Kings who dedicated their second set to me.  I really appreciate all of the love and attention I’m receiving and am so grateful to be heading into this arduous process surrounded by such a dedicated tribe.

The arrow is pointing to the stage at Carter's Mountain

I am at the hospital and settled in.

Before my hospital admission yesterday (Thursday), I met with my oncologist to get the low-down on what to expect during my first visit. Although my MRI results were not back yet (and still aren’t, in fact), he told me that, because of my adrenal involvement, he wants to go ahead with the extra chemotherapy that is administered directly into the spinal fluid through lumbar puncture. I’ll get that done on Monday and three more times during my six cycles of treatment.

On a positive note, I scored a single-occupancy hospital room in the oncology ward that is spacious and has a fabulous view of not only the mountains but also and a sweet little neighborhood dog park. Many people prepping me for my visit told me to prepare to be bored for my 6-day stay. They advised me to bring comfy clothes and snacks and a few things from home to make the space feel personal. Now, this I could do, but I don’t travel light. Last year, my friend Rebecca gave me the CLAX. Not the CLAP, sillies, the CLAX, a collapsible little trolley system. It was perfect for this mission and had its maiden voyage moving me into my room.

 

The CLAX

In the afternoon, I had a PICC line placed. For those non-med techies out there, this involves feeding a narrow tube through a vein in my upper arm to the top of the superior vena cava (the big vein that delivers blood back to the heart.) It allows multiple meds to be administered and blood to be drawn without multiple IV lines or needle sticks. The process was supposed to be fairly straightforward and painless (0.5 on the 10-point pain scale, I was told), but the nurse feeding the needle that guides the tube accidentally hit a nerve and I experienced a burning stabbing pain all the way down my arm.  After I yelled to alert her and she redirected, I said “definitely not a 0.5.”  The nerve pain was short-lived but because of all of the fiddling around with the second attempt, the injection site remained quite painful all night which made using that arm difficult. It was much better today, but still a bit sore.

My treatment began last night.

The night shift swapped-in around 7pm and my night nurse began constructing the tower of power that I have aptly named, “IVan the Terrible”.  It delivers and monitors the chemo meds. Unfortunately, one of the drugs tends to create tiny bubbles in its line that sounds an alarm and stops the infusion. Needless to say, this has gotten old and earned Ivan his name. The nurse, who comes in to deal with this said that they refer to this particular drug as the “champagne of chemos” for its sparkling-like tendencies.

IVan the Terrible

Despite Ivan’s intermittent beeping, I conked out and slept through the night. That is until about 4am, when my room filled with nurses because my blood pressure dropped to the 70s over 40s. I was groggy and had a hard time waking up, but when two guys, clad in all red and wearing matching sling packs across their backs, entered the room with a sense of urgency, I popped to attention. I asked if they were the “ski patrol” and they laughed said they were the mobile emergency team. The on-call doctor was not responding so the nurses had called in the forces.  I was not feeling dizzy or confused and the stat bloodwork they did while trouble-shooting ruled out major concerns so they treated me with a bolus dose of saline (pushed in rapidly).  When the on-call doctor finally appeared, he agreed with their assessment and treatment plan. My BP has remained on the low side, but not dangerously low. They’re watching it closely and we have a plan for tonight in case it happens again so no need to worry.

I’ve had lots of visitors.

Throughout the day and evening, friends have popped in to check on me, or texted to say they plan to visit in the next day or two. What I’ve learned from these visits is that:

1. I have great friends (but I knew that already);
2. Visiting with people, although not physically tiring, can be mentally tiring;
3. It’s best to focus our conversations on the things going on in your life or talk about things we did or might do together in the near future—we know what’s going on with me;
4. Although writing this blog is helpful to me, and perhaps you, it’s not the best place to ask for immediate help/support from my local peeps, so I plan to create two WhatsApp groups to use for this purpose.
1. Homies in the Hood - for Batesvillians who have offered to help and can easily come calling when needed, give me a ride into town, or help me with something that needs immediate attention.
2. The Cville Circle – for Charlottesvillians who have offered to help and that help can best be done in or from town.

I’ll get these set up tomorrow. If you’ve already expressed a desire to be this type of helper, thank you. I'll add you to the appropriate group and you should get a message through WhatsApp. If you want to be in one of these lists just shoot me a message.

I’m doing well with the treatment.

Aside from the fun little hypotension episode this morning, I’ve not had any negative side effects from the meds yet. The anti-nausea medication is doing its job and the steroids have reduced my abdominal pain so tolerating food better. My friend Sean stopped in on his way home from work and listened to me spout on excitedly for over an hour about this and that, jumping from one topic to another, barely taking a breath. When I noticed him just staring and smiling at me for a while, I said, “I think the prednisone just kicked in.” We had a good laugh.

The Waiting, the Wondering, and The Water

As I mentioned in my first post, I’ve done a lot of waiting--waiting for appointments, test results, interpretations of test results, insurance approvals, scheduling of scans, and so on.  This is the kind of waiting that keeps you up at night. As a well-practiced insomniac, however, being up at all hours of the night is not new to me.  What is new is all of the wondering.

In weeks I was waiting for my CT scan approval, I spent countless hours wondering if I have ovarian cancer.  I certainly had symptoms pointing in that direction and I had watched that silent-killer take my friend Jenny in just over a year.  I wondered if I inherited any of the many cancers that my grandparents and my mom died from.  I wondered if this thing in my belly would eat me alive before anyone can diagnose me. On days when the pain went away, I even wondered if maybe this is all in my head and nothing is wrong with me.  Over the past month, I did a lot of research based on my various lab and test results and compared different scenarios. At times, when I’d self-diagnosed with an illness with poor prognosis, I wondered if I should even attempt treatment. They say that all cancer patients go through this, and researching things on the internet is a bad idea, but that didn’t stop me. I have enough medical knowledge to understand most of the articles and research papers I was reading and felt comfortable going down those rabbit holes and freaking myself out.  I mean, what else was I going to do at 3am?

People have suggested meditation, walks in nature, or just going about your regular daily routine as a way of reducing the stress of all of this, but what I’ve found the most helpful is dedicating a few days to stepping away from my usual surroundings, indulging in a healthy dose of denial, and being near water. I am very fortunate to live in a small bucolic village at the foothills of the Blue Ridge Mountains filled with friends and community-minded neighbors. My friend Mary, a cancer-survivor herself, calls our little shire Paradise and often says that she “died and went to Batesville”. In the last month, a handful of friends have joined me on these little mini-breaks in search of expansive water and peace.

In March, after my CT results revealed abdominal masses, but I still didn’t know what they were, my friends Bonnie and Sally took me to Deltaville, a small farming and sailing community about 2.5 hours east of us on the edge of the Chesapeake Bay.  We rented an Airbnb that had a little dock, visited a few friends that lived nearby and chilled out for a few days. 

A couple of weeks later, immediately after my first appointment with my oncologist, my friends Maryline, Leslie, Michelle, Kristen and Sally took me to the Outer Banks for a few days. We hung out listening to the cold howling wind blow, soaked in the hot tub, cooked great food, and enjoyed sunrises over the Atlantic Ocean (okay, not so much me) and sunsets over the Currituck Sound.

On our drive home, I got “the call” from my oncologist with a final diagnosis. It was not the one I was hoping for, nor the one my doctor had assumed it would be when he laid out my treatment plan and offered a promising clinical trial option. My genetic testing revealed that I have High Grade B-Cell Lymphoma (also referred to as Double/Triple Threat B-Cell Lymphoma). Of course, of all of the possible diagnoses, this one is the rarest, accounting for only 1-2% of all Non-Hodgkin’s Lymphoma diagnoses.  Unfortunately, this one does not respond to the standard R-CHOP treatment and disqualifies me from the clinical trial. I’ll be treated with DA-EPOCH-R starting next Thursday, April 16^th. The “DA” stands for dose-adjusting which allows them to tweak the amount of each of the drugs I’m receiving to help minimize side effects at the next treatment cycle; the “EPOCH” stands for etoposide phosphate, prednisone, oncovin, cyclophosphamide, and hydroxydaunorubicin; and, the “R” stands for rituximab. Yes, that’s a shitload of drugs and this treatment protocol requires a 96-hour continuous infusion of these drugs in the hospital at the beginning of each 21-day cycle. So, that’s 5 days in the hospital then 16 days at home. Rinse and repeat for the next 4-6 months.

I did get some good news, however. Yesterday, Sally and Leslie took me to my PET scan appointment on our way back from the beach. Our friend Patty from Batesville, who works at the imaging center, greeted us at the reception desk with a smile and gave us “VIP” seating—three chairs in the hallway outside of the waiting room (it's the little things 😉). I got the results at the end of the day and the lymphoma tumors appear to be contained within my abdomen.  They’ve grown in the last month and there are more of them than the CT revealed but they have not spread above the diaphragm or into my extremities. I’ll take that as a win.  The only outstanding uncertainty is whether it has spread to my brain. My brain MRI was moved up to this coming Wednesday, the night before my treatment starts, so we should know the answer to that in time to add any necessary cerebrospinal treatment during this first cycle.

I know! All of this is a lot, but I am trying to remain hopeful and to keep my sense of humor.  My doctor was forthright about my prognosis so I won’t sugar-coat this with you. He predicted a 60% 5-year survival rate, which is just what it sounds like. There’s a 40% chance that I won’t make it to the 5-year mark, but there’s a 60% chance that I will and may even live much longer. That’s better than a coin flip, so I feel that it’s worth trying.

I feel you all cheering me on, as evidenced by this plaque my cousin Roy and his wife Heather sent me this week (awesome quote credit: Chris G). Keep the love comin'.

Six months of Discomfort

I was just diagnosed with Lymphoma. 

There, I said it. Some of my friends and family found out when I did, in the last couple of weeks. Others will likely be shocked to learn this. I am still waiting on some final diagnostic and treatment plan details, but there is no denying that I am about to head down a long path of treatment and recovery. In an attempt to process all of the information, logistics, and emotions that are about to come my way, I decided to document my journey through this blog. Feel free to subscribe and come along for the ride, or bookmark this page to check back intermittently to see how I'm doing. Of course, you can still reach out to me directly — and I hope that you do — but capturing the details of my disease, treatment, and support needs in this format will alleviate the need for me to repeat myself and help me stay on top of follow-ups with people. 

So, how did we get here? 

In early October 2025, I was at Folly Beach with some friends when I caught a chill I just couldn't shake. I didn't have a fever and hadn't been sick, but I was chilled to the bone. I buried myself under piles of blankets for about an hour until it passed, then rejoined the group and carried on with my day. That was the first of what would become a growing list of vague, nondescript symptoms that accumulated one by one over the next six months, ultimately leading to my recent Lymphoma diagnosis. These included: 

• Indigestion and acid reflux that didn't respond to several rounds of over-the-counter medication
• Bloating and belching after almost every meal
• Nausea and vomiting that appeared for no apparent reason, then dissipated without intervention
• Increased thirst and frequent urination
• Chills and drenching night sweats
• Muscle weakness and fatigue
• A sudden reversal from being an insomniac to oversleeping
• Strange late-night hunger spells and unintended weight loss
• Dull abdominal pain that became more consistent and severe over time 

None of these symptoms was extreme, nor would any of them have warranted attention on its own, but as the list grew, I became increasingly worried that something was not right. My mother died of pancreatic cancer four years ago, just three weeks after her initial diagnosis, so I had reason to be alarmed. 

I went on a trip to Mexico with my friend Bonnie and a small group of women in late January and early February, and although these symptoms continued, we stayed busy, were having fun, and I just powered through each day — attributing my evening exhaustion to our packed schedule. During the first week of the trip, I had what I thought was a bout of Montezuma's Revenge, but now I wonder if it was my body trying to alert me that something was wrong. 

At the end of February, shortly after returning home, I had an annual wellness visit scheduled, so I sent a list of my symptoms to my primary care provider in advance and told her that I hadn't been feeling like myself. She examined me, ordered blood and stool tests, put in a referral to a high-risk pancreatic cancer screening clinic, and ordered a CT scan of my abdomen. She then mentioned that she would be on vacation for the next two weeks and would be retiring at the end of April. Not going to lie — I felt a little abandoned. My lab results came back a few days later with some minor abnormalities, but I was still waiting for my CT scan to be scheduled. I followed up with both the radiology department and my insurance company numerous times trying to understand the delay, and was told repeatedly that prior approval was required for the CT order and that a third party was reviewing it. Two weeks later, just before my doctor returned from vacation, I was so desperate for answers that I agreed to pay out of pocket for the scan, and an appointment was scheduled for the next day. I had the scan done that morning and received the results before I even got home. It showed that I have five large masses in my abdomen — two on my small bowel, one on each adrenal gland, and one on my liver. The doctor covering for my primary care provider called me, acknowledged the "unfortunate scan results," and referred me to an oncologist. A few days later, I received a letter in the mail stating that the third-party reviewer had denied prior approval for the CT scan as they had deemed it "medically unnecessary." I wanted to scream — which I did — and then promptly called my doctor's office to request an appeal. A week later, they approved it and my insurance company agreed to cover it. 

Once I had a referral to the UVA Cancer Center, I reached out to my friend Kathleen who works there, and she quickly took me under her wing, helping me navigate the diagnostic process by sharing my scans with radiologists and oncologists and expediting the next set of orders. She also checked in on my daily just to see how I was doing. I am so grateful to have had her as an advocate by my side. 

Over the next several weeks, I underwent additional lab tests to rule out various conditions, had biopsies taken from my right adrenal gland, took calls with nurse navigators, and had an echocardiogram to make sure my heart is healthy enough for some of the harsh drugs that are likely coming my way. My friend Sally, a retired physician, has been accompanying me to appointments and has been a great support and a sounding board for my questions and concerns. 

On Monday, April 6th, I finally met with an oncologist who laid things out quite clearly. He told me that I most likely have an advanced, aggressive form of Non-Hodgkin's Lymphoma called Diffuse Large B-Cell Lymphoma. He said "most likely" because we are still awaiting results from a final cytology report that will reveal whether several specific lymphoma-related genes are behaving abnormally. If any of them are, it could alter my diagnosis slightly and change the treatment plan significantly. I have a PET scan scheduled for Friday, April 10th, which will determine the staging and how widely the disease has spread, and an MRI of my brain scheduled for April 20th to assess whether the lymphoma has crossed into my central nervous system and caused tumors in the brain. That would change things considerably, as the drugs used in the standard treatment protocol cannot cross the blood-brain barrier — meaning an additional intrathecal treatment administered directly into the cerebrospinal fluid via lumbar puncture would be required. That is something I sincerely hope we don't have to do. 

Where do we go from here? 

I left the appointment with an action plan that is highly dependent on a test results-based decision tree: 

• If my final cytology report reveals genetic abnormalities, my diagnosis and treatment plan could change:
• If my MYC gene has translocated (mutated) → diagnosis changes to Burkitt Lymphoma
• Treatment: R-CODOX-M/R-IVAC + EPOCH-R (a chemotherapy/steroid regimen—each of those letters, above and below, stands for a specific drug)
• If my MYC gene has translocated along with my BCL2 and/or BCL6 gene → diagnosis changes to Double/Triple-Hit Lymphoma
• Treatment: EPOCH-R (a chemotherapy/steroid regimen)
• If my final cytology report reveals no genetic abnormalities, the current assumed diagnosis stands:
• Diffuse Large B-Cell Lymphoma (DLBCL)
• Treatment would depend on whether I decide to enter a clinical trial or not:
• Option 1: Standard treatment: R-CHOP
• Option 2: Investigational treatment: R-CHP plus an investigational drug that takes the place of the “O” drug in the standard treatment.
• If my MRI reveals a brain tumor, then, to quote my oncologist, "Everything changes."
• One option would be to add intrathecal methotrexate (a chemotherapy drug), which would deliver chemotherapy directly to the brain.
• Another option may be to reconsider treatment altogether if the disease is too far advanced. I'll cross that bridge if and when we come to it. 

One thing I’ll note, is that all of these treatment plans have a curative goal. That’s the good news and is what will help get me through these treatments. 

When will treatment start? 

Because of the aggressive nature of this cancer and the urgent need to treat me sooner than later, my oncologist has scheduled my treatment to start on Thursday, April 16th (yes, that’s next week). By then, we’ll know if any of those genes mentioned above have mutated and I’ll have made a decision about enrolling in the clinical trial or not. If they can get my MRI moved up, then we’ll also know about any CNS/brain involvement. If not, then we’ll know soon after my first treatment and the additional chemotherapy can be added then. 

Regardless of the treatment chosen, I’m looking at 4-6 months of some pretty harsh drugs. My hair will definitely fall out, my immune system will weaken, and I’ll have days in between treatment cycles of extreme fatigue. 

How can you help support me? 

At this point, I don’t even know and probably won't until I understand the cadence of my treatment and its effects. Certainly, staying informed through this blog and checking in on me periodically will be helpful. For my local friends, I may need rides to/from appointments or company while being infused. I’m hoping that my abdominal pain will subside soon after treatments begin, so eating will be more palatable, but since I live alone, offers of large quantities of food may not be helpful. Maybe if you’ve made something delicious for dinner and have leftovers, you could drop off a single portion for me the next day. I’ll probably also appreciate offer to go on walks with me or to come over to watch a movie or play a game, but none of that is different than life pre-cancer. I’ll just have to see what needs arise as we get into the thick of things. I appreciate everyone’s desire to help out.

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Much more to come....