This has been one of the longest weeks I can remember. Sunday my husband and I spent the day and late into the evening with his mom by the hospice bedside of his grandfather. I didn’t know him well, but he was always charming and kind to me. Jarrod adored him and apparently got a lot of his singing talent from the man. As for my mother-in-law, her love for her dad is obvious and deep. It was a long, emotionally trying day for everyone. No one likes to see people they love in physical or emotional pain.
Monday, the plan was to relax, curl up on the couch, and read a good book. Instead when I woke up still coughing I sent messages to my main oncologist as well as the oncologist directly overseeing my Keytruda. I then fell back asleep. I woke up to a call from the cancer triage nurse at Sibley (part of the Johns Hopkins system, and where I’d been receiving Keytruda).
She was concerned about my coughing, and only grew more concerned as she heard how often I had to pause my sentences to catch my breath. She asked if I would be able to come into Sibley and said that she was going to confer with one of the oncologists and call me back. Well, she called back within about 15 minutes and said I needed to come into the emergency department at Sibley and have a battery of tests.
I don’t think I’ve ever readied for the day quite so fast because she kind of put the fear of God into me. She was friendly and everything, but you don’t expect to be told that some coughing means you need a CT scan!
Thankfully I was able to borrow a friend’s car since Jarrod was taking ours to the mechanic due to a pothole from Sunday. I convinced Jarrod that I would be fine driving on my own, it was just some tests, and I’d see him that afternoon.
Yeah, it wasn’t so straightforward.
I got there and got taken back almost immediately. The first time they accessed my port it hurt like the dickens and they couldn’t get any blood return on it. Normally accessing my port doesn’t hurt terribly bad if I’ve had my emla cream on it like I did that morning, so that seemed unusual. Then a second person accessed it and was able to inject saline into the port, but still not get any blood return. They decided to access veins on my hands.
If you know anything about the last times I had my veins directly accessed, I’m sure you can imagine the senseless repetition of “no, no, no, pain, ow, no, no, bad idea, no, no, no” that was my immediate response as I literally curled up on the hospital bed in fear with tears starting to fall as I remembered how much it had hurt last time.
They really needed the blood. They first accessed my right hand and I sobbed, and I screamed, and I swore, but I got through it. Then, a few hours later, they were able to get blood from my port, but needed blood from an additional spot to check for infection so they accessed my left hand while I again sobbed and screamed and swore while that kind nurse told me about her beloved cat because I asked if she liked animals.
In addition to the CT scan I was given two nebulizer treatments and some saline to ensure I was fully hydrated. The treatments seemed to help a bit, though I was definitely amped up afterward!
Then they started talking about me staying overnight. Apparently, the scan showed a tumor pressing on an airway and so they wanted me to do a walking oxygen test and that would decide if they were going to admit me overnight.
I texted Jarrod and tried really hard to be brave and not scared out of my mind. I’m not actually brave, I’m terrified when I don’t totally understand what’s going on or how to make my body stop struggling.
The results of the test indicated that I should stay overnight. They hooked me up to two iv bags of antibiotics because there could be an infection. They assured me that they were letting Dr. Meyer (my main oncologist) and Dr. Wright (my radiation oncologist at Sibley) know what was going on. Everyone was incredibly kind and helpful to me, even as I was struggling to stay calm and not panic. The room they wheeled me up to was surprisingly huge and thankfully Jarrod showed up shortly after I got there.
Seeing him and getting a hug from him was amazing. I was still scared, but I was significantly calmer and more certain that I could handle whatever might come. He had packed a bag with what we would both need to stay overnight and even coordinated with my sister to have delicious Booeymonger sandwiches delivered. Roasted veggies with cheese always help.
Tuesday we got to meet with one of the oncologists. She was great, but I still ended up sobbing at her. Not only did I have a tumor pressing on an airway, but all the tumors in my lungs had grown significantly since July, plus I had about 20 new tumors all over 1cm each in my liver. Previously my liver did not have any noticeable tumors.
I cried and hiccupped and sobbed. If you’ve never sobbed with only one working lung, I should let you know that it is really uncomfortable and leads to a lot of coughing. I do not recommend it.
Thankfully my sister and her amazing mother-in-law brought lunch and visited with us. I gave my sister a huge hug and told her what we knew and then added that, as much as I look forward to seeing my dad, I don’t want to see him any time soon. I’m not ready for that. In the immortal words of Dr. Who, “I don’t want to go.” Laura was wonderful about cheering me and making me feel more determined. Still scared, but determined. I come from two families of incredibly strong, kickass women. I can be strong. I am not done fighting.
I spoke with a pulmonary specialist, Dr. Elizabeth who was fantastic. She explained what the options were for what could be done to help me breathe. She talked about the whole huddle of doctors who were discussing my care and figuring out what was best for me and my specific needs. Plus, she was fantastic and human and kind. And, when she saw the book I was reading her response “Oh, I loved that book!” Shallow, maybe, but it made me feel like a real person not just a tumor-filled body.
My main oncologist called while Dr. Elizabeth was there and talked with us and assured me that he was up-to-date with what was happening. He assured me when I asked that he wasn’t giving up hope, just that things were going to be harder from here on out, and that a clinical trial would likely be my best option if I got into a good one. We made plans for me to see him as soon as possible after I was discharged so that we could figure out my next treatment steps.
Our pastor and friend, Amanda, also came. Praying with her and having Eucharist, as well as simply talking with her was huge. Amanda has been praying with me since my first surgery three years ago. Having her visit meant more to me than I know how to say. I was also incredibly touched that she assured me that the other two pastors at my parish were praying for me and knew that I was in the hospital.
Another awesome visitor was a woman who had been on the gynecologic cancer retreat with Jarrod and me. Getting a hug from her was amazing, plus she remembered my love of cats and brought me an adorable kitty ornament that made me grin.
By Tuesday evening we had been informed that they wanted to keep me in the hospital overnight. They wanted to keep an eye on my oxygen levels, keep giving me daily antibiotics through IVs, and make sure I stabilized a bit. That was fine. Sibley thankfully has pretty decent sofabeds so Jarrod was able to get a decent amount of rest. He did drive home to grab more clothes for the two of us, plus feed our cat and take some photos for me.
Wednesday we found out that there was a chance they might want to keep me in the hospital until Friday. Apparently they were trying to see when they could do a procedure to improve my breathing. If they could do it on Friday, they’d keep me in the hospital until then. If it was Monday, they’d have me go home and I’d do the procedure as an outpatient.
I was near tears at that. Everyone was nice and it was as restful as a hospital stay can be, but I just wanted my bed and, more importantly, my cat. I couldn’t take deep breaths to calm down, so I wanted to sit near my cat and hear him purr calmness at me. I understood the reasoning, but it was still a blow and I was hoping that I would get to go home.
We also were visited by a patient care coordinator who had been involved with the retreat and talking with her helped. Plus, she said to just text her when it was time for chapel (I’d gotten permission to attend) and she’d get me a wheelchair so I could get downstairs without exhausting myself.
We then chatted with an oncology social worker who was fantastic. She even suggested that I bring the disability paperwork that’s been giving me so much trouble in and she could help with that. I did also promise her that I would soon see my therapist since I ended up babbling way more to her about my fears and guilt than I meant to. I blame being really tired and the bad news about my tumors bringing that guilt and feeling that I haven’t done enough way high up to the surface.
Chapel helped. The priest didn’t give a great homily, but the ritual (even if I couldn’t do all the standing and kneeling), the readings, and the Eucharist helped in a way that I can’t put into words. I was still terrified, but I was reminded of my faith. I had also called my secondary parish. Lately Jarrod and I have been attending a Wednesday service at another Episcopal church near us. The pastor and deacon know about my cancer and pray over me when I’m there. I was really sad to not be going to their service that day and I really wanted to ask the small congregation that I knew would be there to pray for me. So, I got voicemail and left a very abbreviated “I’m in the hospital so we won’t be at service, but there are some problems and I would really appreciate if you could include me in the intentions at service today.” I found out Thursday that they did mention me, and strangely appreciated me asking for the prayers.
They had me do another walking oxygen test. I passed the test part in that my oxygen levels stayed up, however I also needed a chair quickly because my heart rate spiked like mad and I got super dizzy. Stupid only one fully inflating lung. The nurses who helped me back to my room were lovely though and made sure to say that they appreciated my hoodie. It was from Third Space Wellness and says “Life is a beautiful sh*tshow.” It accurately describes my view on life. I also got a stern talking to about stopping before I was dizzy rather than grabbing onto the wall as I got dizzy.
Well, the prayers must have done something because I was informed Wednesday afternoon that I was going home! I was thrilled. I got a thick packet of discharge instructions, prescriptions for antibiotics as well as steroids (to help my breathing), and a reminder to not overdo it and to be careful to sit when I got tired rather than trying to push through it. I guess it’s not always good to try to overachieve?
Before I had even been discharged I had called and emailed to set up an appointment with my main oncologist. He was kind enough to fit me in today, Friday, despite a completely full schedule. I think he gave up his lunch hour. I’m not sure how I ended up with really great medical people.
As soon as we got home, Toby started to purr and did not stop. My friend Quinn brought over some of her incredible brownies and encouraged Jarrod to take some time to himself since he had also had a crazy few days and needed to center himself. He apparently really enjoyed just getting to talk about football at our neighborhood pub and focus on sports rather than life or death (who would have guessed?!) Talking with Quinn was really good and helped me feel calmer.
It was so good to sleep in my own bed that night with Toby curled up at my feet just purring his own happiness at having his people back. That is a joy that will never get old.
Thursday I found out that my procedure was scheduled for Monday morning and that they seemed confident they would be able to make me more comfortable. I started telling a few people what was going on, but it still seemed surreal and it was hard to tell. Telling people made it feel more real when I was still working up the courage to not be in denial.
Friday’s doctor appointment made it real. Dr. Meyer spent ages talking with us and listening to every question I had, never rushing me. He described exactly what was going on with my scans, showed them to me slide by slide so that I could see exactly what was happening. Not every patient wants that, but it always helps me to visualize what’s going on.
He then suggested the plan that he thought, for now, was best for me. I’ll be on two drugs — one I’ve had before and one I haven’t. The drugs are gemcytomine and dacarbazine. The side effects will be similar to chemos in the past, but the nausea might be worse. Plus, it’ll be every other week so there will be less recovery time in between.
I’m scared, I’m holding onto hope because I can’t imagine not fighting to believe that I’ll get my miracle. I have the right genetic marker for a trial at NIH, so I just have to wait a few weeks while they review slides of my tumor to see if I’m fully right for the trial. Who knows what’s around the corner?
Dad always believed that there could be something good just waiting around the corner. My job is to get to that corner, even if I’m bald, nauseous, and suffering from joint pain. I’m lucky enough to have friends who have my back and will help me get there. Their kindness moves me to tears. I hope I can show at least half as much love as they have shown me.
Now, today, that love needs to go to my husband and his mom. My husband’s grandfather passed away last night. Selfishly I hope the funeral home is flexible and allows us to schedule the service for next week to balance giving out-of-town relatives time to come in and (selfishly) me time to be less nauseous and pain-filled after this coming week’s chemo and neulasta shot. I love Jarrod and Patti. I want to be there to support them. Love is all I have to give.