First Chemo, Bronchoscopy & More (2nd Blog Post)

Welcome to the second post in my cancer journey blog, I'm so happy you're here!

May was such a busy month, I had 9 visits with providers, which included 1 chemo visit, 1 surgery, 2 procedures, and one visit to the ER visit that led to a four-day hospital stay that of course included many more tests, including lab work and imaging. I'm going to try to give you the lowdown on all these things without boring you to death or going on for 24 pages...so let's buckle in and get down to business. If you'd like to review what has happened so far, the paragraph below is a quick summary, or you can go back to blog post # 1 to read in more detail!

Quick little review: I broke my wrist on March 21, 2024 and had surgery to reduce it on March 28th. On April 8th I went to the Emergency Room as I had significant unrelenting pain in my right chest - especially when deep breathing. A CT was performed, which ultimately was clear of all the suspected issues, but instead found lung nodules, and I was told to contact my oncologist. On the 10th of April I had a PET scan and on the 11th it was confirmed that the nodules in and around my right lung were indeed cancerous. The next stop was to determine if this is a reoccurrence of my cervical cancer that had spread to my lungs, which is also known as secondary lung cancer, or if I had acquired a new unrelated cancer in my lungs, which would be referred to as primary lung cancer. The distinction between the two would dictate my treatment. The way to determine between the two would be by biopsy through a bronchoscopy, and the referral was placed that day.

And Here's What Happened After That:

I was able to get into see the pulmonologist quickly with an appointment on April 15th, just four days after the referral was put on. However, I would not be able to get the bronchoscopy until April 30th. It was the first time in this whole line of events where there was such a long time between appointments. I didn't know quite what to do with myself. I continued to work on all the paperwork that comes along with having a major illness/injury, taking a leave of absence for work, applying for benefits, preparing to move (more on that later), and a bunch of other fun things that pop up when you have a significant illness or injury, or in my case, both! I also decided this would be a good time to have an existential crisis, which I talked about in the first blog post. That time to think ultimately led me to creating this website and blog though, so I can't be too sad about it. Having the inspiration for this website and blog filled the rest of the time until the biopsy as well, and I learned to be thankful of the time I was given, even though the reason for the time was not the best.

Never waste a moment when you could be reading! Here I am in pre-op reading When Breath Becomes Air.

Before you know it, it was April 30th and time for my bronchoscopy. My mom came down the night before so she could take me for my morning procedure and be with me after. She took the photo to the right to update my friends and family, a very glorious picture indeed. While we waited, I started reading When Breath Becomes Air, an amazing memoir by Paul Kalanithi, a neurosurgeon who was diagnosed with Stage IV Lung Cancer. My provider who was performing the bronchoscopy saw me reading this book and told me it was one of his favorite reads! While I was waiting in pre-op, I was approached to be part of a research study on the use of Ion Endoluminal System in bronchoscopy. They would not be changing anything about my treatment, only recording details from my procedure to add to their data collection. More information can be found at this link.The procedure went well, and they were able to successfully retrieve a sample from one of the tumors in my lung. Recovery was simple, no adverse effects, I just slept the rest of the day.

On May 2nd I had physical therapy for my wrist, which was so soothing and helpful! Here's a video of this warmed sandbox they put my arm it - it was pretty cool!

It has been such a frustrating time to have a barely functioning arm on the opposite side of where the tumors were - I wasn't comfortable in any position! The next day I met with my oncologist to discuss the results of the biopsy. It was confirmed that the lung tumors were a metastasis of my cervical cancer, meaning that I was officially diagnosed with Stage IV Cervical Cancer. My oncologist was eager to get me in ASAP to get a port and into treatment, but I had been having an issue with a tooth - and it was important to get that resolved before moving forward. On May 6th I met with my regular dentist, who sent me to both an endodontist and a periodontist that same week. Everything ended up being tip-top, and I was sent back to my oncologist to begin treatment.

As promised, my oncologist was not wasting any time - she scheduled my port insertion scheduled for May 10th, 2024 - with a two day lead time. A port is a central venous access device that is planted under my skin to access larger veins. This is very common for cancer patients receiving chemotherapy for two large reasons: chemotherapy drugs are very irritating to the vascular system and it cuts down on the number of times cancer patients need to be stuck for labs and treatments. If you'd like to learn more about these ports, click here to go to a cancer center website that goes into much more detail. A big shout out to my friends Sam & Katie who helped out a lot during everything, and helped by taking me to this surgical appointment. I'll also post a little video of de-accessing the port (taking with explicit permission) at the bottom of the page for those that want to see a little bit more.

After the port insertion it was time to schedule my chemotherapy treatments. At the infusion center I go to, they tend to keep your infusion days on the same day of the week throughout your treatment. The plan was for my family to alternate taking me when I moved back near them, which is nearly four hours away from the treatment facility, and the best day for the group was Tuesdays - so my first chemotherapy session this reoccurrence was scheduled for Tuesday, May 21st, 2024. The delay in getting into treatment left me with another little window of 11 days without anything scheduled. During that time, I read books, worked on my plan for this website & platform, drove down to my mom's place to try get things ready for move in, packed up my apartment some more, and otherwise got some rest.

Here's a bit of time during my chemo day when I don't have my hands and feet on ice, and it's delightful!

The first day of chemo went fairly easily. My mother took me to my first chemotherapy appointment, and we arrived a little after 8:30 AM. The facility that I receive treatment at has valet parking, which is absolutely wonderful because even the closest parking spots can be quite a trek when you're having cancer treatments. After I registered I was sent back to the infusion lab area to have my port accessed for the day and labs were taken. There are a few different labs that they look at to ensure that my body is physically able to receive the drugs scheduled for that day. After they send off the labs I go see my doctor. At this time she reviews my medications, how I am feeling, if there's any new symptoms, etc. As it is the beginning of treatment there isn't much change, so the appointments move swimmingly. I am sent back out and wait to be called back to the infusion room. Once back in the infusion room, they show me to my chair (on occasion, because I am first there, I can sometimes pick which chair I like, which is a small reprieve.) The nurse will introduce themselves then connect me to the IV machine, where I will receive pretreatment meds (like anti-nausea) and other secondary medications before starting the "hard core" chemotherapy drugs.

My chemotherapy drugs are carboplatin, paclitaxel, and on future appointments I would also have avastin, but because of its interference with wound healing, it was not ideal so close to my surgery. This is the apparent standard treatment for those with Stage 4 Cervical Cancer. I am receiving only chemotherapy because my tumors are too large and numerous to be an ideal candidate for surgery or radiation. With the combined drugs, I would be in a treatment chair for a majority of the day. This was a bit of a disappointment, as in my first round of treatments I had cisplatin (another standard), which was a 6-7 hour delivery. No one likes being in the chemotherapy chair for a long period of time, and if I had any hope this time it would be that the treatment would be much quicker. Unfortunately it looked like I would be in for the same long days. The difference this time? The cancer drugs now can cause peripheral neuropathy, and my doctor suggested that I have my fingers and toes on ice during treatments. This takes out a lot of options for me to do anything except sit there aimlessly during sessions, which is extremely hard, as you have seen, for me to do nothing. I have had to utilize effective blanket stacking my nose to switch pages on my kindle - so not all has been lost! Another downside this time - I would lose my hair within two weeks of my first chemotherapy treatment, and it will take a few months after my last appointment to start growing back. I had already added multiple wigs and covering to my amazon wishlist before my first appointment- so I felt prepared enough (at least supply-wise!) for when that happened in a few weeks time. The appointment went well, no nausea or pain during or after the appointment. I was still pretty tired - so I went home and slept for many hours.

Two days later though, I had a climbing fever (which can be dangerous for cancer patients) and additionally was having slight difficulty with deep breathing. I contacted my friends Sam and Katie, stating, "I think I should go to the ER." Katie came over and took me to the ER. In the ER they discovered that I had accumulated fluid in between the outer layer of my lung and the pleural lining of the lungs. This is referred to as a pleural effusion, and is the reason that I was having difficulty deep breathing, as my lungs could not fully expand with the fluid taking up that space. I was admitted to the ICU on May 23, where I had chest tubes placed. As a nurse, I've done a lot of chest tube care as well as chest care removal, and I joked that it was my desire to always know what my patients experienced that led me to this event. My oncologist visited me in the morning, and later explained that the fluid buildup was a direct result of the tumors, and the six weeks of time between tumor discovery and first chemotherapy. Although timing wise the admission had happened just shortly after my first chemotherapy, it was not a reaction of my chemotherapy in any way. My stay in the hospital was an interesting experience for sure, although it was not my hospital, it was within the hospital chain where I work. However, the only person I explicitly saw that I knew was an advanced practitioner who placed my chest tubes. My mom had come back to help me in the hospital I spent a few more days on the regular floor of the hospital before being discharged on May 27th. although not one that I would love to have again any time soon.

One of the most significant issues during my stay that I want to talk about was pain management. First, it is important to understand what my pain control schedule was before this hospital admission. The pain that came from these tumors had severely affected my life, and as a result I was on significantly ‘heavy’ pain medication. I took 60 milligrams of morphine extended release tablets daily that allowed a base level of pain control. In addition to the extended release, I was prescribed 8 milligrams of hydromorphone (Dilaudid) to take every 4 hours as needed (“PRN”) for break out pain management. It may seem like a lot, and it is considering I don’t take any medications at a normal baseline, but at this time the pain was that significant to require these medications. I even tried to space out the hydromorphone as much as I could, but I could barely make it an hour or so beyond the prescribed four hours, and at times the pain was not even controlled with taking the medication on a “scheduled” 4 hour interval. This meant I woke up in the middle of the night to take medication just to be able to be able to sleep and do my normal activities. If I missed the middle of the night dose, I would wake in incredible pain and by that time I was already behind the ball. I would feel completely useless to do anything until I got back in front of the pain, which would take hours. This is an important concept in nursing, so we usually tell patients to let us know when the pain is coming back on, not when it is back in full force because as with me, getting control of your pain that is out of control is A LOT harder than maintaining a level of pain relief. As a spoiler for the future, the need to take these medicines as frequently after having more chemotherapy treatments does decline, which is hopeful that the treatment is effective. Now I’ll move on to why this was an issue during this hospital visit.

When I was admitted to the hospital I had already been in the ER for about 9 hours at that point, mostly due to waiting for a transport team to take me to the ICU. In the ER I know I was given 50 mcg Fentanyl, although I’m not positive how frequently it was given. I was moderately comfortable, but it would only go down hill from there. When I was admitted to this hospital, the order sets had changed, and I did let the providers know my normal pain medication routine. My pain was consistently at a 6-8 on a scale of 0-10, but I wasn’t being given my pain medication. I reiterated to the nurses and providers what my usual schedule was, urging them to contact my oncologist if they had questions. However, after they had added the morphine to my scheduled medications, problems continued. The prescription had been written different than how I had been instructed to take it, because at home I took one at morning, one at midday, and two at bedtime, and my oncologist wrote it as take two 60 mg twice a day. Thus, when a nurse was giving me my morning medications and had 2 morphine tablets, I tried to tell her I only took one in morning, and I wasn’t sure I should take both. Without any more conversation, she told me she would mark them as “refused” and they would contact her about it. But I wasn’t refusing the medication, I wanted the medication, I was just attempting a discussion with my nurse about the quantity. (Also - what she said wasn’t accurate - As a nurse in the same hospital system, I can tell you no one is going to reach out to her over that refusal) She continued to tell me she had reached out to the doctor, but I never did get any pain medication until the next time it was due. 

As for the PRN dilaudid, I didn’t even know that it had been written into my orders at the same time as the morphine, and I was not offered any for perhaps another day, even though my pain continued to remain above 6. I would have asked for it specifically, but I had no idea it was available. I then had a wonderful nurse who told me it was there, amongst other great things she did, and I am so apologetic that I didn’t grab her name. If I had, I could have submitted her for a Daisy award, which is a note of distinction when a nurse does something great. I have at other times written down nurses names for this purpose, and been asked for mine for the same reason. I wanted to let you all know about this program, because it is an honor for a nurse to be nominated for this award, and then they get a little daisy to put on their badges. Back to my stay, after I found out that the dilaudid was there, I did ask other nurses about it specifically at appropriate times. There were issues here and there with getting it still, for example they didn’t want to give it at the same time as morphine so that my blood pressure didn’t drop. They wanted to give me the scheduled med first and then the PRN after an hour. After a couple times of this, I asked if they could give me the immediate release medication first and then the extended release after the hour, so I wouldn’t be in pain while we waited. As an example of the pain I was in -  I am a very explicit rule follower (which makes me a bit boorish, I agree) and I was tempted to have my mom go back home and bring my pain medications because of how much pain I was in. And to say it got to that point is truly saying a lot. Towards the end of my stay, I was able to get a PCA (patient-controlled analgesia) pump, which delivered a continuous amount of medication intravenously, as well as allowing me to press a button for more medicine when needed. There were obvious maximum limits set to this delivery system, but this delivery system finally allowed for my pain to be controlled.

There is so much I want to say about this experience, as evidenced by this long retelling, that has been repeatedly cut down to be more succinct or remove excess emotions coloring my words. However I wanted to share my experience, because I was completely surprised that this was happening at the time, and variations of this occur all the time. What I would like to share for anyone reading this is to advocate for yourself. Repeatedly. There’s always kind ways to go about it, but in the end it’s your healthcare, and you have to stick up for yourself (or have someone who will for you.) I wish I had done more in my hospital experience, and even one time I wish I would have requested a different nurse. In summation, nominate the great nurses for Daisy awards, and don’t be afraid to speak up about your needs and even requesting different providers when it warrants it.

I think that’s all for now. Obviously more has happened since, but I have toiled over this post for too long so I’m going to post this and move along. See you in the next post!

And here's the video of what de-accessing a port looks like if you're interested: