After my diagnosis with Hodgkin lymphoma on February 10, I took a couple of weeks to visit with various doctors at various teaching hospitals in Chicago and one in Minnesota. That journey is a longer story and one I hope to write soon. For now I will just say the medical system is strange - it feels like both an art and a science and to get opinions from multiple experts requires the patient to become a layperson’s expert themself just to make a decision about what to choose.
Anywho.
I’m receiving treatment through the University of Chicago. They run a special clinic for young adult cancer patients like me that uses their children’s hospital as it’s home base. This has some definite perks: I get to see the same nurses every time I visit, which is incredibly comforting (to see a familiar face in a hospital just makes the biggest difference). I get a small but private and brightly colored room for my treatment outpatient visit. (There is usually a window, although today there was not.) The other rooms are occupied by other young people going through the same process I am, which makes the experience feel less isolating the way it might if I was the only young person surrounded by later in life adults.
It also has some definite downsides all of which are connected to the fact that I am in a children’s oncology department. A six or seven year old girl arriving with both parents, wearing a lovely dress, and bald on the top of her head. Hearing babies cry in the distance. A mom calmly making return patient appointments for next month, and the month after that.
This fact reminds me to be brave. If these children can be such brave fighters, so can I. And I try to spend part of each visit praying for the patients, both children and young adults, filling the rooms all around me.
So what does a treatment day look like for me?
I check in to the hospital, often late morning or early afternoon. I usually sit near the super hero masks. My nurse brings me back to get situated in my room. I take my shoes off and put them at the base of the bed. My chemo bag goes on the window ledge (or today, on the side table). Wesley (or my mom) takes a seat next to the bed.
My nurse takes my vitals and sends a message down to the pharmacy with the information. The pharmacy can’t send up the chemo until I’ve arrived and they confirm my weight and vitals. We chit chat about how busy her day is, how much traffic we hit driving in. If at all possible, I try to bring up Rosemary so I can share some stories from the week. Today, we talked about how she is starting to walk these past two weeks and how we’re planning some birthday festivities for a big day coming up next month!
I’m currently receiving a standard of care chemo treatment for Hodgkins patient’s called ABVD. Each letter stands for a specific chemo drug that honestly I couldn’t spell (or possibly even say) right now if you paid me $100. Even though I’ve received each of them four times now. :) I also receive peripheral medication such as a steroid and anti-nausea medication. I just finished cycle 2 - each cycle is two treatments, two weeks apart. So that is four chemo treatments down!!
The nurse accesses my port, which is a small device in my chest just under my skin. It was put in before I started chemo and acts as a catheter into a large vein. This gives them safe and consistent access to give me medication through an IV, like chemo treatment! They can draw blood through it and even use it for CT scans to give me contrast. In order to access it, they insert a needle (just like they would for a regular IV), but it is specialized for the port. This is a sterile process and I love to watch just how meticulous it is.
The nurse unwraps a plastic package that contains a paper mat. She unfolds this carefully to reveal the sterile objects within. There is a set of sterile gloves which she puts on. Then she picks up the small sponge on a plastic handle. It contains a special soap, which she asks if I’ve had an problems with (allergy, rash). I haven’t. She squishes it around a bit on the paper mat to get the soap flowing, then thoroughly cleans the area of skin around my port. Next, she uses the special needle, that looks a bit like a butterfly with its plastic handles, to access the port. Most days of the week, she works with children, so she asks if I want her to count to 3. I always do - the prick barely hurts but I still like the warning and countdown. Then she takes an IV plastic/clear bandage around the area, connects some tubing, and flushes it with saline. She draws blood for the testing they need to complete every time I come.
Sometimes before and sometimes after this process, she confirms the current medications I’m taking. These days, I’m up to six! Anti-viral, antacid, blood thinner, thyroid, seasonal allergy (ok, that one is over the counter, but it’s that time of year in Chicago!), and antibiotics just on the weekends. All of these together serve to prevent my immunocomprised body from developing infections all on it’s own. I also have optional medications to take as needed: anti-nausea, pain relief, and even a fancy mouth wash that has helped with some oral symptoms I’ve had with chemo. All in all, lots to keep track of both as I take them every day and as the nurse reads down the list to confirm what I’m currently taking before they, you know, give me chemo medication through my IV.
Then we wait! Today, the chemo arrived very, very quickly, which was exciting! Other days the pharmacy is slower and we might wait an hour or more before it even arrives.
When I first started chemo, I told Wesley I wanted to try and have a “liturgy” for my chemo treatments. I wanted to have a few things I tried to do in a repeatable, orderly way during each visit. I have not been quite that disciplined, and that time for each visit is variable enough it’s hard to be very precise, but I do have a general shape that I’ve been pretty good about following. This feels important to me because it helps make an overwhelming process more approachable.
While we wait for chemo, I pull up the Daily Mass readings and try to read through them slowly and thoughtfully. Today, I had my missal with me, so I was able to read the scriptures of the day as well as a short reflection. The first reading really struck me:
Cast all your worries upon him because he cares for you.
Be sober and vigilant.
Your opponent the Devil is prowling around like a roaring lion
looking for someone to devour.
Resist him, steadfast in faith,
knowing that your brothers and sisters throughout the world
undergo the same sufferings.
The God of all grace
who called you to his eternal glory through Christ Jesus
will himself restore, confirm, strengthen, and establish you
after you have suffered a little.
To him be dominion forever. Amen.
-1 Peter 5
Even this suffering, cancer and chemo and blood clots and all of the anxiety that comes along with it, is just a brief, little suffering when compared with eternal glory. And I love remembering that my “brothers and sisters throughout the world undergo the same sufferings.” Not that we each carry the same cross, but we all suffer in our own ways and we owe each other as much compassion and love and support as we, imperfect and finite though we are, can muster.
Anyway - back to my little liturgy.
After I read through the daily readings, I try to spend even a few moments praying for those around me - those I saw in the waiting area, those whose rooms I passed walking in, my nurses and doctor and pharmacist and medical team. I try to pray not just for their healing but for their hearts, that the Lord would be close to them in whatever they need. Sometimes, this prayer is very, very brief. I try to think about all of their faces and just lift them to the Lord. I think that’s ok. We’re all just doing the best we can.
After this, I usually post a little update to Instagram. It’s nice to know people I love know I’m doing chemo and the messages I get really put a smile on my face as I sit there.
Once it starts, chemo itself doesn’t actually last that long! The first of my four drugs is administer with a “push,” meaning the nurse just administers it through my IV with a syringe. It takes all of about 20 seconds. The next two drugs each take 10 minutes to drip through my IV tubing. And the final drug takes about 30 minutes. On a day like today, where we didn’t have to wait that long for the chemo to arrive, the actually administration takes less than two hours.
At some point in my visit, my doctor stops by and listens to me. Today we chatted at length about my fun blood clot (that story coming soon). The “nurse navigator” I work with, who helps me with scheduling and FMLA paperwork and random question I may have, also drops in to chat. If I’m lucky (or remember to ask, which I usually don’t), I get a visit from the massage therapist. There is down time between the drugs depending on how many patients the nurses are taking care of that day. The tubing gets kinked and the device starts to beep and we wait for someone to come fix it.
After an Instagram post and a bit of scrolling, I try to set my phone aside and read. I recently finished Midnight in the Garden of Good and Evil by John Berendt which was quite good. His writing is masterful and the stories he tells are such an interesting insight into the cultural of Savannah, Georgia. My aunt Phyllis lived there for a period of time a few decades ago. Her health has declined in recent years. I so wish I could discuss the book with her and get her take on Savannah. Apparently I decided to keep with the theme of southern America and I picked up a collection of Flannery O’Connor short stories next, something I have not read much of since college. I love Flannery O’Connor’s writing. Her stories are humorous and dark and incarnational and salvific. She’s the kind of writer that makes me want to write, too. She is masterful but her writing isn’t effortless. It’s the kind of stories that makes you sense the tinkering, without taking away from the perfected end result. You can tell she started in once place and finessed and cut away from and rewrote and sanded until her characters left off the page and the plot builds to an explosive encounter with our broken and beautiful humanity.
Today, I didn’t get any reading in. I Facetimed Rosemary and Grace instead. Rosemary sang to me and gave me kisses through the phone. It was perfection.
Once chemo is finished, I just get to go home! The nurse removes the IV and needle, I get a children’s bandaid (today it was pink with a barbie? illustrated woman of some other sort? To be honest, I can’t quite tell. but she’s wearing a chef’s hat which made me smile), and I pack up my things. We walk back to the parking garage and check Google maps for the least traffic-y route back to the western suburbs. Today, we stopped by a bakery for some treats. It will be my birthday this weekend and while I’m not very big on birthday celebrations for myself, I feel perfectly justified in using it as an excuse for some extra baked treats this week. :)
I generally feel OK on the car ride home. If I get too hungry, sometimes I get a bit nauseous, but if I snack I’m ok. Some pretty significant fatigue usually sets in just about the time we get back to our house. I lay on the couch and watch Rosemary play. And that’s about all I’m up to for the rest of the evening. She goes to bed, we might watch some TV, and that’s that. That’s a treatment day. Tonight, my body is tired and my brain just won’t stop, so I’m bringing you this treatment day story with a blanket on my lap and a puppy at my feet.
Two weeks from today I will go back for a PET scan that tells them how well my treatment is working. This will determine the next few months of the treatment approach! I’ve been accepted into a clinical trial which allows me to avoid radiation treatment, which is important given my age and the location of my cancer. It will help me avoid complications down the road that can be a long term side effect of radiation. I will also get access to an immunotherapy drug that is currently used for relapsed lymphoma patients. They are studying it to see if it can increase the already high “first round treatment” cure rate for lymphoma patients. From my understanding, it’s a very promising option and I’m really excited I qualified for the trial so as to include it in my protocol.
Sometimes people hear “clinical trial” and can assume that is only reserved for desperate cancer cases. Fortunately, that is not true for me. My diagnosis was fairly straightforward (relatively speaking) and I could have chosen a standard of care option just as easily. I just felt like the clinical trial might give me a chance at fewer long term side effects, while providing some really important data for future patients with my disease. If I can make this journey easier for anyone else walking it, I feel grateful to contribute.
And that’s my update for tonight! I tried to remove some pressure from myself to “craft” these updates with the same care I might if it were a creative non-fiction piece. I so enjoy that genre, and I like crafting things with a bit more care. But I wanted to share this “day in the life” with you while it was fresh on my mind from today. I hope it’s a useful little glimpse, even if it wanders a bit.
Thank you, dear loved ones, for all of your support. Cards continue to arrive every day. I’m keeping them in a basket now and I try to pull one out to read when I need a boost (which is often). I get so many texts with encouraging words or fun photos or jokes. Some very wonderful people are bringing us meals. I feel absolutely flooded, a tidal wave of prayers. I’m in less pain tonight from this blood clot for the first time in days and it feels like a small miracle. Thank you, thank you. If I’m slow to respond at times, please know I see all of your messages and they make my day - I’m just not great at writing back always. But I’m sending you all my love right back.
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Beautiful beautiful post. I often say Rosemary is very courageous. I see where she gets it from. And you get it from your incredible Rodgers heritage. So many brave women ahead of Grace, Rosemary and you. Your Italian great grandma, Antonia Pascente and Cousin Annie were very tough too and persevered through many trials with grace and courage through faith.
~Grace & Victoria’s mana. Rose’s Nana, married my love Ralph.Soninlove Wesley.CousinRoro,Nancy,Carol,Janet,Diane,many others&cherished Aunts.sisters in Christ.”Son”Father James.Cubs GSA
Congrats for getting through round 2!!! I was so excited to hear about your clinical trial! It is amazing how these trials lead to the approval of life changing drugs. Bill is on Imbruvica which was an experimental drug for his lymphoma and now approved! It has kept him in partial remission for 7 years! The combination of faith and modern medicine will see you through 💕