This post is part of my “Cancer Chronicles” series. Each installment highlights an experience from my time as a patient and cancer thriver with the intention of creating a complete archive of stories.
It may sound crazy that I’m thankful for having gone through cancer treatments twice, but it’s the truth. Going through my first round of surgery and chemotherapy didn’t turn out to be the kick in the pants I needed to shape up my lifestyle or attitude. In fact, it wound up being a one-way ticket to depression, vulnerability, post-traumatic stress, and an overall feeling of being lost. But I’m getting ahead of myself, let’s back up.
I found out I had cancer in May of 2014. Soon after my diagnosis I learned that I would have to face the first major medical ordeal of my life: a debulking surgery throughout my abdomen. In the weeks leading up to the procedure I tried to squeeze in an entire summer’s worth of activity, knowing I would have to sacrifice the rest to recovery. I worked on becoming as healthy and strong as possible and enjoying life to the fullest. This time included 15 to 20 mile bike rides each weekend, a road trip to see Bruno Mars in concert, endless hours in my garden, visits to my favorite restaurants, shooting off fireworks in my backyard, and taking pictures of my scar-free abdomen. Life was good, but each beautiful day brought with it an undercurrent of fear and anxiety over what I would soon face. At least I knew I was going to bring a pile full of great memories with me to the hospital.
On July 2, 2014 I was fully sedated, sliced open from my navel downward, and the diseased areas were carefully removed from within my body along with my right ovary, right fallopian tube, and appendix. Following my four hour surgery I spent two miserable weeks in the hospital recovering. My husband took detailed notes of the events of each day (at my request). There was so much going on within my body and surrounding my care, it’s quite overwhelming to look back on. Here is an excerpt from one day of his notes:
7/4/14 – Independence Day!
- Last night went well, she had some abdominal pain, but not enough to keep her up. Hourly/bi-hourly nurse visits, along with the occasional alarm from the machines were ever present though.
- Had another chest x-ray and found there is still some fluid around her lungs. Gave her another shot of Lasix and the flood gates opened again!
- Big steps today, were able to take her off the oxygen and remove the nerve blocks in her back! Three less wires to be concerned about is a great thing. No increased pain from the removal of the blocks, thankfully.
- Walked today a bit farther than yesterday and her oxygen levels were at 92%, resting without it at 95% so the nasal oxygen tubes are out unless needed.
- She is getting the spirometer up to 1000 again (an instrument for measuring the air capacity of the lungs), so I think we are back to where we were the day of the surgery, day after the surgery.
- After her walk, started to feel a bit nauseous so they gave her a shot of Protonix to see if that helps.
- Today will be her first bathing since before the surgery, hopefully that goes well. They are going to sit her in the shower and let her clean what she can, then the aide will go in and finish up.
- I wonder if we can see any fireworks from the window in the room.
- She is still feeling nauseous, the Protonix did not do the trick, so the nurse gave her a shot of Zofran and that worked wonders, for a minute.
- Betsy told me that last night when the nurse tried to take her blood, he had to do it twice because her “vein was moving.” A nightmare for her fear of needles.
- The dizziness/vertigo came back and it seems worse than before, so the doctor came up and said to use the spirometer to help open up the lungs now that the water is being removed from around the lungs.
- 3:00 pm, still struggling with the nausea and dizziness. Have to wait until 4:00 pm for the Zofran and Tylenol.
- Back on the oxygen tubes in her nose as the aide who checked it last found that it had dropped below 90%. It is causing her to have bloody scabs in her nostrils, hopefully she can get back off of it soon.
- We had a relaxing night, just sitting around watching tv. It was nice for a change to just hang out like normal people. Almost forgot at times we were in the hospital.
- When we were getting ready for bed, she looked in the mirror and saw her face in the light up close for the first time. Her skin is suffering from the lack of her normal cleaning routine, and it really got to her. She asked why everyone was lying to her about how good she looked. I think she looks amazing, but it is hard to convince her of that.
- Sleeping seemed to start off good, but her back was a real problem after a while. Not ready yet to lay on her side, as it it too hard to breathe, so the back is it. The nurse came in and gave her a bolus of the pain meds, and that seemed to work for a spell. Changed her pillow a few times, moved her around a bit, but not much relief. Couldn’t see any fireworks, but we could hear them.
I am grateful that I can only really “remember” these moments because they were so well documented. Looking back on the notes is always emotional and feels like a peek into someone else’s life. I’m not sure if it was the drugs or my own suppression that causes most memories to be so hazy (probably a mix of both), but I do remember the end of my stay quite clearly. I had grown fully cognizant of my reality and was increasingly agitated and uncomfortable. I was desperate to go home where I would be free from wires, tubes, hospital gowns and socks, and where I could return to my life. The only saving grace during those final, difficult days in the hospital was my belief that this one surgery would be all I needed to eradicate cancer from my body and my life. Sadly, that hope was soon dashed.
On the glorious morning that I was finally discharged from the hospital, I was also told the results of my pathology. I found out that the reports indicated that the cancer may not have been fully annihilated and that I had more strains of Mesothelioma than they had originally thought. I was utterly devastated. Instead of going home to recover completely and pick up the pieces of my life, I had to prepare for another surgery and the unknown and scary world of chemotherapy. The glimmering light at the end of the tunnel dimmed to darkness.
Just days after I returned home, I found myself in the back of an ambulance. I had been experiencing unrelenting sweating, vomiting, and intense pain throughout my abdomen. Driving to the hospital takes about an hour and I wasn’t confident I would make it without medical intervention. We were sure that something was terribly wrong and called 911. It turned out that I was extremely dehydrated and suffering from severe constipation and the side effects that come along with it. Getting my bowels back on track post-surgery was no joke and remained a challenge long after this incident. After being checked out and stabilized in the emergency room, I was told that I would have to spend the night in the hospital for observation. I was sent to the very same floor I had just been released from, which caused me to have somewhat of a mental breakdown.
Being back on that floor robbed me of my newfound freedom and felt like being imprisoned. I thought facing cancer would be an isolated incident but it was becoming much, much more and I couldn’t take it. I just wanted to feel better so I could move on to my months of chemo and eventually on with life. How did my one surgery and the loss of one summer turn into this seemingly endless mess? It was hard to find hope in that moment and nothing sounded more appealing than crawling into my own bed and hiding from the world. I pleaded with the staff and my husband to let me go home as I was sure that I would not survive one more night in a hospital bed. I came very close to signing an AMA (against medical advice) discharge document so I could go home, but ended up giving in after some convincing from the very patient and levelheaded people around me. I survived the night and returned home shortly after waking the following morning and receiving the green light from my doctor.
I lost the entire month of July and most of August to recovery. I had to cancel plans on my calendar that I had overzealously committed to before surgery. An in-home nurse visited multiple times a week to check on me and take pictures of my healing incision. Everything had become an insurmountable challenge: walking, eating, sleeping, eliminating… at times it felt like I may never be able to do anything normally ever again. But I was so eager to move on to the next phase of treatment that I worked hard each day to make as much progress as I could. Baby step by baby step, I got better.
In an effort to start chemotherapy as soon as possible, my doctors discussed scheduling a port installation surgery near the end of August when I would (hopefully) be feeling healthy enough to endure treatments. The thought of having a device implanted into my chest to aid the administration of chemo drugs was a horrifying thought. My doctors advised me that this device, a “PowerPort,” would save the veins in my arms and hands from being burnt out. It seemed I had no choice but to embrace their advice if I wanted to get this next phase over with as quickly and easily as possible. The fact that it was scheduled the day before my 29th birthday was an added punch in the gut. Somewhat reluctantly, and most definitely fearfully, I had the port installed and spent my birthday wracked with pain. My four courses of chemotherapy started just days later.
Coming up next week, The History of My Cancer Treatments, Part II: Systemic Chemotherapy