Friday – Day 11 at the hospital

So, I can’t count. I thought until this week that I had only spent 10 days in the hospital. It was 12. Oops.

Friday, April 5th, I started taking my targeted treatment pill. I had to drink some Miralax and milk of magnesia. I pooped a tiny poop which took a lot of work to get out. The cardiology doctor clamped my heart drain.

Physical therapy came by taught me how to use crutches, so that I could go up and down stairs in a few weeks when I could walk well enough to be off my walker. We had a split level home at that time. The walk to the stairs in the hospital was farther than I had walked yet after femur surgery, and I had to take rests on the walker on the way there.

Nothing much else happened that day, except that we moved to a different floor of the hospital because I was doing better. It was at about 10 o’clock that night. Apparently it happens around the clock. I didn’t want to leave my awesome night nurse, Holly. I would have preferred to go to bed than have to stay up to change rooms. I had no choice, so off we went to meet my new night nurses.

The floor upstairs was quieter with a more tucked-away spot for C to sleep. I got another wrist monitor like I had in ICU and had fewer beeping machines. Going to the bathroom was much easier because I didn’t need to unplug from anything but the blood pressure cuff and my calf massager. I lost my oxygen humidifier by leaving it behind in my old room. It made great white noise. On a less busy floor, we slept better that night.

My IV had gone bad. Again. I got a new one every other day during my stay, and woke up with a 2nd one each time after surgery. I had so many during my stay that I lost track. The nurses woke me up at 3 to put in a new IV. It wasn’t so bad, since I knew they were coming. Someone almost always woke me up at three to take blood anyway. They were able to use the new IV for the blood samples and give me a break from the extra poke. I appreciated it! My arms and veins were tired! And every color of the rainbow, plus brown! Also, C is an amazing sleeper and slept through a lot of what I couldn’t.

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Thursday and the Standoff

On Thursday, Nurse Monica told me that I couldn’t have any more Fentanyl because I would be going home soon. Did she know something that I didn’t because the cardiology doctors still didn’t like how much my heart was draining. Also, I hadn’t seen one in two days, and the one who had been coming in at 6 a.m. had been saying that they wanted to clamp my drain for two days, then see if my heart was draining properly was the one who was MIA.

Also, I hadn’t pooped in over a week. Considering that I had surgery on Day 2 and Day 7 at the hospital, it wasn’t that unusual because surgery throws a curve ball to the system that tells it to not poop. The group of three doctors that visited every day prescribed me some milk of magnesia. I had been taking a laxative for the previous few days in my apple juice. No luck. So Thursday, my nurse gave me an enema to see if that would move things along.

So, I don’t know what happened, but C was tired of being in the hospital. Super duper no fun in the first place, add my germ OCD to the mix, and maybe something was happening at home that I didn’t know about. It was clear to him that my son needed me at home. I think I had missed something. A lot slipped through the cracks while I was on painkillers.

At some point that morning, we started pressing about when could I go home and when did they plan to clamp my heart drain because my son needed me at home. The heart doctor who had been missing for two days showed up and said that after major heart surgery, I could go home once they knew that I would make it alive out of the hospital to be home for my son. I think they wanted my heart to drain less than 50 cc’s a day before they tried the clamp, but no one really said that.

I was in tears by the time they left. I wanted a plan.

PT came by, and everyone had heard that there’d been a showdown in my room, so I skipped working with the therapist that day. I was really sore from the day before. I wished I had plowed through it though. That’s more my style.

Later in the afternoon, a social worker from the hospital stopped by to see what could be done about the situation earlier. We had already said everything we wanted to say to the doctors and didn’t want to talk about it anymore.

Also the three doctors ordered a chest Xray because I was still coughing. I’m pretty sure that one of the respiratory therapists put a note in my file. She had timed her visit during a coughing attack. So Xray guy comes to my room and puts a hard board behind me, tells me to sit still while he does an Xray and then leaves.

The three doctors came back the next day and said I still had fluid around my lungs and they didn’t like my cough. I said, “Well, yeah, of course I have a cough! I have a tumor in my lung and fluid. It’s not going to go away overnight. Geez! Give it some time!” Actually, this might have happened the previous week, about two days after heart surgery.

Anyway, on Friday, the MIA heart doctor came by again and clamped my drain tube. She told me that they would do an echocardiogram the next day after 24 hours . If it looked good, I could go home.

That day, I pooped a tiny poop that was probably more stool softener than anything. Also, my targeted treatment chemo pills arrived. Things were looking up!

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The Longest Day

Tuesday, April 2nd was the longest day ever! My appetite might have been funky, but not eating from midnight until after a 4 p.m. surgery was torture for me. I could have pills and water and nothing else. Oh, and I had thrown up my delicious dinner the night before, had skipped lunch, so I basically went from 9 a.m. Monday to after surgery Tuesday evening without any sustenance.

We found out the genetic mutation that caused my cancer on that morning: EGFR. We were soooo happy! My targeted treatment chemo pills got ordered. The doctors said I would start feeling better after taking three of them. The pills would address the fluid around my heart and lungs and dial back the tumors in my body everywhere. I could hardly wait!

I went to radiation that day, and they told me I didn’t have to come the next day, if I didn’t feel up to it after surgery.

Femur surgery went much the same as heart surgery, just no ketamine this time. I was optimistic and believed the doctors that I would walk on my new femur within days, no hours after surgery. No big deal! Just like they said. I could walk on it immediately.

I woke up from femur surgery feeling way more with it than I did after heart surgery. This isn’t saying much. I still had to will my eyes open. A nurse sat with me, and C wasn’t in the recovery room yet. I knew he had gotten some dinner at the cafeteria while I was in surgery. I flipped open my eyelids about every 30 seconds until he got there. Yeah, I’m a little attached. I don’t remember if we talked much. I think he held my hand through the hospital bed bars.

When I got back to my hospital room, all I could think about was how bad I had to pee and how bad my leg and hip hurt! It hurt so f*cking bad! My sweet nurse, Austin, who had taken care of the night before asked how I wanted to go: bed pan, commode or all the way to the toilet in the my bathroom? Um, bed pan? Mysterious. Commode! Commode! I can do that! He helped me to it. Holy $h*t, doctors are crazy when they tell you that you’ll be able to walk on your brand new femur!!! It might have taken two nurses and my walker. I don’t know, but I made it with lots of help.

I had also started my period unexpectedly the Saturday before, and I needed new hospital undies and a pad. The ones I had on for surgery were long gone. I also needed someone to put them on for me. I couldn’t do anything for myself if it involved my legs. I’m a really independent person, and I took a crash course in asking for help. Had to get help moving my legs out of the bed, then moving them back into the bed. Every time.

The nurse took care of my pain. He gave me some Fentanyl in my IV. Ahhhh, relief! I used the commode a few more times after that, then decided that I couldn’t stand the smell of it. I’d rather go all the way to the toilet, even if it took me forever with my walker. I needed help getting my drawers down anyway, so may as well just do it right.

On Wednesday, I went to radiation. The techs were pretty impressed. Since I was very immobile, one of the techs lifted me out of my wheelchair and placed me on the table near my back mold and vice versa back to the chair when treatment ended. I said I would see them the next day!

Physical Therapy came by on Wednesday, too. This guy had energy! Thank goodness. He showed me how to get in and out of bed the easiest way, how to even out my gait eventually, and explained why I needed to walk on my leg, rather than try carrying it like one would if it were in a cast. He carried my oxygen, and we went for about a 50 ft walk, one-way. I was unstoppable! And then, I was done, overexerted.

The therapist told me to sit in my hospital chair three times a day, walk once or twice a day, and that sleeping in a sitting position would help my healing of my leg and my lungs and their fluid. I almost forgot about my favorite, calf-massaging machine. Oh boy! I had started using that in the ICU and the nurses ordered another one for me. I kept that thing going all the time, except when sitting in my chair. It was another thing to unplug for bathroom trips, and it saved me from blood clots and felt good on the legs. I guess some people hate that machine. I wanted to take one home!

My day nurse, Monica, planned out all my pain medication so that I would have less pain during therapy and maybe something else to relieve pain after. She was amazing!

Oh yeah, and for sure, unless you have immense pain tolerance, you cannot walk on your stabilized femur right after surgery, or even the next day. It took me four weeks to the day before I took just one step without any assistance from my crutch or walker. Sometimes doctors are ridiculous.


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The Pericardial Window

My nurse woke us up just before 6 a.m. on Thursday, March 28th. He seemed a little panicked. Surgery had just called, and they were ready for me. I needed to shower with pre-surgery soap before I could go, so my nurse got me a towel and turned the shower on.

A knock on the door.

Surgery technicians were there to take me right then! No time for a shower! The nurse brought pre-surgery wipes to the room. It was protocol. I turned orange like a bad spray tan with each swipe, and it had to be done on my whole body. I got what I could reach, and the nurse did my back for me, tied my gown back together, then down to surgery C and I went. I got transported in a wheelchair again. Still wasn’t supposed to be walking on my compromised femur and hip, and I think that’s just what they do to get people around in the hospital. Makes it harder for someone to pull off a getaway. Haha.

When C and I got down to the pre-surgery room, curtained-off areas for patient check-in, we met with all the people who would be in the operating room. The nurse who would be taking care of me, the doctor who would be administering ketamine (oooohhhh, C got excited for me), the anesthesiologist, main surgeon, cardiologist/surgeon, and I don’t know who else, but I met them all, and they all assured me that they would take good care of me.

One of the technicians gave me a special IV that went straight into my wrist vein on the right, and I forget why. It was for administering something that couldn’t go in my regular IV. It all made sense at the time. Someone explained that they would make an incision just below my sternum, and that I would have a drain coming out of me for monitoring. Yeah, ok, let’s get this thing started! I was ready to feel better, like a new person, like the ER Cardiologist said. I was ready for some sedative and pain blockers too. I kissed C goodbye, and he said something funny, and into the operating room I went where I saw all the familiar faces I had just met.

They laid me on the operating table. The doctor who said she’d give me ketamine stroked my shoulder (so soothing) while another technician put a mask over my face to breathe in some gas. The surgical assistants pulled my gown down to my knees and told me that even though I had just done the pre-surgical wipes, they had to clean me one more time. I remember the cardiology chief coming in with a string of residents behind him and greeting everyone. Then, I was out!

I woke up in a recovery room. A nurse was helping me drink water through a straw. I couldn’t hold my eyes open very long. Eventually, C joined me. I had been talking to him. Don’t know about what. Goofy little dreams from ketamine that were more mundane than I had expected.

He later told me that he offered me crackers to eat during recovery. I said, “Did you even wash your hands?” He assured me that he had to wash his hands before he entered the recovery room. I guess I ate some crackers. Even sedated, I’m still a hygiene fanatic. I remember none of this.

Once I had shown enough stability to leave the recovery room, I got pushed in a hospital bed to the Cardiac ICU. I don’t remember this trip and had no idea where I was in relation to the hospital. I just knew I was in ICU. A stuffed bear that work had sent greeted me at my bed. C called him Delotted Bear after the intravenous painkiller that I could access with a button at my side. I know I’m spelling that drug wrong. The nurse hooked me up to a wristwatch-like monitor that showed my oxygen saturation and heart rate. It connected to a reader on my finger. I didn’t know how good I had it. A blood pressure cuff stayed on my other arm and connected to the monitor. A drain tube extended out of my upper abdomen and into a bulb to catch heart fluid.

I was hungry once I was more awake! I ordered the only thing that sounded good: a yogurt and berry parfait. It sounded like a fantastic, high-calorie thing to eat that had some protein, which I knew was important for fighting cancer. With how picky my tastebuds had become, I ate whatever I craved.

C decided that he was hungry too and headed down to the cafeteria for some dinner. As soon as he left, I got a wave of nausea. I threw up for the first time in seven years. The hospital has amazing barf bags! They have a circular frame at the opening, then a long, cylindrical bag with volume measurements on the side. The nurses note everything, like how much you throw up! So much for my dinner. I didn’t trust my tummy yet.

When C got back with his food, I told him that I’d lost my cookies.

He hugged me and said, “Aww, I’m sorry I missed it.”

Who says that??? ❤  My sweet man!

I spent the next couple of days in ICU, most of which I don’t remember. C says I mostly slept. I was on heavy painkillers. My everything still hurt, my back, my hip, my ribs, and my chest after surgery. I still coughed. My orthopedic surgeon stopped by and talked to me about femur surgery and drew me a picture on the white board in my room.

Maybe it was just one day in ICU. I thought I went to the getting better floor of the hospital on a Saturday, but that doesn’t make sense. Whatever day I got transferred, my mom and Little Guy had dropped by. I wasn’t good company and couldn’t stay awake during their visit. I was glad they came by and hoped that Little Guy wasn’t too alarmed by seeing his mama with tubes and two IVs on me. I hoped that it assured him to see me doing better.

The getting better room didn’t have an IV painkiller, nor a wireless wrist monitor. I had 5 wires connected to stickers on my chest that reported my vital signs, a blood pressure monitor, oxygen, an IV, and still the heart drain tube and bulb. To go to the bathroom took a call to the nurse’s station to unhook the monitoring wires and blood pressure. Oxygen stayed on me all the time, and the nurses turned it up any time I had to walk or sleep. My saturation level would fall those times, and then I’d have a coughing attack that would make the nurse come running back! The nurse on duty would then offer me some prescribed cough syrup that contained codeine or a Tessalon pearl, if I hadn’t taken all my doses that day.

On Saturday, C’s sister came to town early in the morning. As soon as she had heard I was in the hospital earlier that week, she had booked a flight. She took an Uber/Lyft to the hospital. C, his sister, and I had pancakes from the cafeteria together. That hospital has the best pancakes! C’s sister left to help out my mom and Little Guy at home. She came back that evening to spend the night with me. Since C’s sister is also a nurse, my nurse allowed her to unhook me from my monitor and take me to the bathroom when I needed to. My nurses still checked on me regularly, emptied my heart fluid drain bulb, and brought me medicine.

It was nice to have C’s sister there. We talked about lots of things, her girls, kids, animals, family. My oncologist stopped by that evening, so she got to meet him, too. I ordered dinner from the cafeteria. I couldn’t eat very much, and my eyes were always bigger than my tummy. We found a movie to watch on TV that we both liked, then when it ended at 9, we both agreed it was time for sleep.

C came back in the morning. He’d done laundry at home and showered. He brought me my Sonicare toothbrush, my fruity toothpaste, and gentle face wipes. Yep, fruity kid toothpaste. I had eaten so many cough drops in January and February that any minty flavor made me want to throw up. My tastebuds and stomach grew more and more finicky the sicker I became, so I had switched toothpastes and couldn’t tolerate many smells or tastes all of a sudden. I’d never been a picky eater until then. Strong smells made me cough. Candles, shower gel, perfume of others, fragranced lotion, onions, they all got me coughing and choking and in a bad mood. Life’s less fun when you struggle to breathe.

I don’t remember when C’s sister had to fly home that day. Too soon. At some point either that day or the day before, we watched UFC on C’s computer because it was on midday, rather than late at night. They stayed awake, and I didn’t. I did a lot of sleeping to make up for all the waking. Phlebotomy came in almost every morning at 3 a.m. to draw blood. Doctors started their rounds at 5 a.m., and more than one usually showed up between 5 and 6:15 from different departments. Plus, nurses came in every hour and a half to two hours. A team of residents visited every day from the oncology department.

On Monday, I started radiation on my spine, T6 through T11. I was scheduled to start the previous Thursday, but heart surgery happened instead. I would do five treatments, five days in a row. Since radiation affects all fast-moving cells and kills them, this round led to esophagus issues. My radiologist had warned me. I had a little more trouble swallowing, especially really dry food, which I already struggled with, like bread. I had acid reflux. My tummy didn’t feel great with painkillers plus radiation. The treatment would make me more tired for the next two weeks, which can be offset with activity, and that’d be great, except I was about to become fairly immobile. I was really excited to have radiation, despite side effects, because it promised pain relief in my back!

My orthopedic surgeon visited again that day too. He asked if I remembered his visit last week when I was in ICU. I told him that I remembered that he drew me a picture. Whatever he had said, he would need to please repeat it.

He drew me another picture of a hip and femur and explained that I needed a rod to stabilize my fractured femur and prevent a hip break. If I broke my hip, I would need hip replacement surgery. They would insert the rod down the middle of my femur and screw it in. He assured me that this would make my femur so strong that I could walk on it immediately after surgery. Surgery would be the next day at 4 p.m. I could eat until midnight.

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The Echocardiogram & the E.R.

On Wednesday, March 27th, my husband (let’s call him C) and I got ready to head to the hospital for the Echocardiogram on my heart. I didn’t know what the heck that was, and I had sworn off Googling anything after my diagnosis and relied solely on my medical providers for information. I hadn’t asked them to describe this procedure prior either.

I was going go to work after the appointment, and my husband would as well. I dressed in casual clothes for the appointment and hung my work outfit in the backseat of my car. I tend to sweat when I’m nervous. My husband drove his car, so that I wouldn’t have to come back home, then go to work. The hospital is a long drive across the city, and my office is about in the middle of it.

We were running late, and C was behind me by a few minutes. I got to the hospital first, valeted my car, and a kind, older gentleman who works for the hospital walked me to the elevator and to the Cardiac Center. He knew right where it was because he’s a patient there too.

It didn’t take long for the cardiogram technician to call my name and take me to the exam room where I saw the ultrasound machine. Ding! I knew what we were doing now. She took my vitals, and my blood pressure was high, higher than ever. She took it again, just to check, and it only got worse!

I had to put on a gown so that the technician could access my heart area. C had joined us by now in the exam room. I had to lie on my left side and try not to cough. The technician jellied up the ultrasound wand and started looking at my heart. She took a lot of pictures and recorded it beating. The concerning part was that my atrial valve struggled to open and close properly. I still had lots of fluid around my heart which caused a lot of pressure on it.

When she was satisfied with the information she had gathered, she said she’d be right back while she went to get a doctor to come in to talk to me about the results. When she came back, she said, “We can’t let you leave. The doctor has reviewed your cardiogram, and we’re taking you to the E.R.”

She had also brought back the blood pressure machine, and took that again. Higher still! Then she admitted she should have taken my blood pressure before telling me that I had to stay at the hospital.

The doctor came in and told me that the amount of fluid around my heart had increased to 3 centimeters. I needed surgery now to drain the fluid. They didn’t tell me exactly how dire of a situation my heart was in at this point. Needing surgery in the next 12-24 hours was a big clue. They could either drain it by inserting a tube by my lungs that would go to my heart or create a pericardial window. It would be a permanent “window” in the back of my heart that would allow excess fluid to drain.

Two nurses escorted me and C to the Emergency Room. I hadn’t been to one since giving birth to my son in a small, mountain town. Oh, we in the city! They wheeled me down in a wheelchair where we waited in line, and the E.R. had a security guard to check bags and possibly a metal detector. Details are a little fuzzy.

Once I was checked in and transferred to an E.R. wheelchair, I got taken to another little curtained room for an EKG. I didn’t know what that was until it happened either. The technician was funny. I don’t think he meant to be. It was a small area, and he told C to come in and close the curtain all the way because “this isn’t a peep show.” The technician stuck several wires to my chest and back with magnets or stickers and got a reading of my heart. He warned me that I’d be having many of these done.

After that, someone else came to take us to an E.R. exam room with sliding doors and curtains. I had to put on a hospital gown, get more vitals taken, pee in a cup, give blood, give more blood for type matching in case I lost a lot during surgery, and get an IV. Woof. That was the worst! I was still bruised from the biopsy IV the previous week and the CT scan IV the week before that. I called my bosses and mom to let them know that I had not been allowed to leave the hospital and that I’d be staying there for a few days.

Lots of doctors and nurses came in and out and wanted to know what I had eaten and when because they wanted to get me in the operating room as soon as possible for a pericardial window procedure. I wasn’t clear about what this was just yet. I assured them that I was fine. Call off the sirens! I had been doing all of my normal activities, cooking, cleaning, grocery shopping, and that yes, I had to move slowly and rest a lot because moving quickly made me cough, but I was fine. A nurse from oncology, a different one from Monday, came down and kept us updated on when surgery would happen.

In the meantime, a cardiac doctor came in with four medical residents to do another ultrasound on my heart and have the students manipulate the wand against my chest to see my heart condition. Omg, they were there for an hour, and I got so tired! The doctor was encouraging though. As he left, he told me that I would feel like a new person after the procedure, and I 100% believed him. He said that my cough would get better and that I would feel so much better after I had it done. He was right, and I’ll get to that later!

Finally, it was decided that I would have the procedure the next morning. I could eat until midnight. Yes! I had only had a bowl of oatmeal with blueberries that morning, and all I could think about was fooooood, and this place had a pretty good menu. I got transferred to an inpatient hospital room. It was late afternoon by this time. C lamented that of all the hospital appointments, this one was the one when he didn’t bring his laptop which would have allowed him to work and/or distract himself. We both thought we were going back to work that day. Ha!

Once we were settled in our room for the night and I was hooked up to several monitors, more doctors and nurses visited. The oncology doctor for the inpatient floor came by to talk about the procedure I would have the next day. We told her that we didn’t understand how this window worked. She pulled up an illustrated image of a pericardial window on her phone. She explained that the window would put the excess fluid into my lung. This concerned us, since I already had a mass in my lung and fluid around both of them. She assured us that the lungs have a way of getting rid of the excess fluid and that the procedure would make me better, not worse. I trusted the doctors, knowing that they see this condition often and treat it successfully. We felt better after her visit, and told the doctor that she was the first one to explain the procedure in a way that made sense. The visual aid helped a lot!

The evening was pretty quiet after that. Nurses came and went regularly. Prior to surgery, the doctor required blood samples. It seems like they got taken at midnight by my nurse, whose name I’ve forgotten. Chris? Kyle? I don’t know. Nice guy but nervous when it came to finding a vein for the lab work. He got the labs done and said he’d let me know when he heard from the surgeon in the morning. C and I got what rest we could until then.


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I got my first tattoos!

I got my first tattoos!

The day after my all-day visit to the cancer clinic, I had my radiation planning session. The radiation technician gave the tattoos to me as part of mapping for radiation treatment. They’re little tiny blue dots that get lined up with lasers so the radiation works on the right areas. Also during mapping, a mold got made of my back, so that I could lie in it while getting treatment on my spine. For that I got a dot on each side of my rib cage and one on the sternum. I have to say that one hurt the most! I can only imagine how much it hurts to get a big tattoo on the sternum. One dot and I complained about it for a couple days.

Since the radiation oncologist wanted to possibly treat my pelvis, too, I had mapping done there and got two dots on my lower tummy and one on each hip. They made a mold of my legs for that treatment. Dots on the tummy don’t hurt, much like getting a shot there where we have more adipose tissue.

I called my dad that night while I went for a very slow walk up the street. (Walking too fast induced the cough!) He had cancer a few years ago and underwent radiation treatment too. I said, “Dad, you didn’t tell me I was going to get tattoos!” He had prepped me for radiation and told me that it doesn’t hurt, just makes a person tired.

He said he’d forgotten all about the tattoos and laughed. He laughs a lot and is great to talk to about cancer treatment. Very reassuring and tells me about our tough Scottish and Danish heritages that fight like hell through things!



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The Cancer Clinic

A nurse on the oncology team at the awesome hospital called me one day during my lunch, right after I had woken up from my lunchtime nap in my car. (Lunchtime naps in my car were a daily thing starting in February.) She had heard about my case from my doctors. She wanted me to come to the multidisciplinary clinic on Monday, March 25th and spend the day at the hospital. She would take my health history and get some blood work to present my case to the team of oncologists. From there, they would either accept or deny me into the cancer treatment program. If they accepted my case, I would meet with the oncologist, radiation doctor, and social worker in the afternoon.

To prepare for my visit to the cancer clinic, the doctors scheduled me for a PET scan at the hospital the Friday before my big day with them. No, it did not reveal my spirit animal to be a unicorn. (But it is.) For a PET scan, I had to fast for a few hours beforehand, then pass a glucose test when I got to the lab. Once I passed, the technician injected me with radioactive solution. I expected this liquid to be bright green or yellow. It is disappointingly clear. I know. Sad! After the injection, the technician took me to a quiet room to lie down (or sit up for those of us who cannot lie down because it induces the cough) on a hospital bed and be still and quiet for 30 minutes to let the solution work its way through the system. I wish insurance was more willing to cover this procedure. It is so relaxing! I would be so excited if my doctors told me I had to do another PET scan!

The scan itself doesn’t take long, maybe 20 minutes. I laid down on a table in regular clothes, since none of them had metal, and the table slides in and out of a tube at a very slow pace while it imaged my radioactive body. It’s pretty quiet, sounds like a fan. I had to hold really still. I almost fell asleep during this procedure more than once. Seriously, PET scans are a relaxing process.

On Monday morning, my husband and I went to the hospital for our big day! I had brought water, a book, and lots of hard candies to make it through a long day of talking to people without coughing too much. I got my blood drawn, met with the nurse who had contacted me and gave her the rundown of my symptoms that started in October, then went to the cafeteria for lunch. My palate had been extremely picky for a few weeks leading up to this, similar to being pregnant. Onions, the thought or smell of them cooking or raw, would induce gagging. I chose an onion-free, egg salad sandwich and SunChips. The nurse had told me that morning how important protein is when fighting cancer. It was the only thing that appealed to me.

After lunch, we went back to the multidisciplinary clinic. I don’t remember who told us the medical team had accepted my case. It didn’t matter. I was so happy and grateful that I wanted to cry. My husband and I spent a couple of hours in an exam room while one doctor after another came in to talk to us. The oncologist came by, a warm doctor with a Texas accent. He sat close, explained everything, and put his hand on my knee in a reassuring way.

He asked, “What is your goal today?”

“My goal today is to have a treatment plan,” I said.

He didn’t directly tell me that he couldn’t give me an exact treatment plan. My genetic testing results hadn’t come back from the biopsy. Without that, they didn’t have a specific treatment plan. Ok. Hurry up and wait. I had been optimistic and thought they’d be back that day, Business Day 5.

We reviewed my CT scan from almost two weeks before, which I had only heard results of but not seen. We reviewed my PET scan, which showed basically the same stuff and concentrations of cancer within my body as the CT scan. I had a fracture in my femur and the structure of my right hip was at risk to break, if we didn’t reinforce my femur. The cancer had degenerated my T6 and T11 in my spine, causing my unbearable back pain. I had excess fluid around my heart, which put pressure on it that was dangerous to my health. It would have to be drained at some point. I had pleural effusion, or fluid around the outside of my lungs, primarily the right one. No wonder I was coughing! Depending on my genetic results, medication would help with the chest fluid issues. I asked for something to address my cough because I blamed so much of my pain on it, and if we could do something to reduce it, that would help. The doctor gave me a prescription for some cough suppressants, Tessalon pearls.

The nurse on the team was also in the room. She wanted to pull more blood for a different genetic test that would be back within a week. Aside from getting poked with a needle again, this sounded good to me! I was willing to do anything that would answer why I had lung cancer. A nurse came and pulled two tubes of blood from me at some point, and she was a pro. I had spent the past week getting poked for blood at my regular doctors office and IV’d for the iodine contrast during the CT scan, and then for the biopsy the next week, so I appreciated a quick and efficient draw.

The doctor finished up the plan that we could put in place, and he and the nurse left for their next case. He gave me a hug before he left. I really liked this doctor from the moment he walked in the room. He also gave me his cell phone number, so that I could text with any questions or issues that came up. He assured me that I could use it, and if he needed to pass the request on to his nurse, he would let me know. So far, he’s been true to his word and responsive!

The oncology radiologist visited next. He wasn’t as warm as my oncology doctor, but I still liked his no-nonsense way of presenting information and talking to us. He brought a resident with him, too. We discussed the back and hip pain I had been experiencing and how I had been managing it. I had been taking all the allotted ibuprofen in a day, every day since December. It would knock it down to a manageable level, so that I could function and talk. I remember one day at work, the pain was so bad that I took ibuprofen as soon as I got there, but I couldn’t speak to anyone until it kicked in about 30 minutes later. I tried not to cry at my desk because my back hurt so bad. I thought it was all due to my cough upsetting all of my muscles and bones. And every day was different. That was a bad day.

The radiation doctor explained that radiation would target my affected areas specifically with a laser which would kill all the cancer cells, and any fast moving cells, too. Radiating the spine could affect the esophagus and give me swallowing issues for a couple of weeks. Radiating the pelvis/hip could make me start menopause. I had to laugh at the last one. Fighting cancer is hard enough. Let’s take on menopause on top of it. Hahaha. Might happen. Ha. Radiation would knock down my pain significantly. I was sold, not that I had a choice. It was part of my treatment plan, no matter what my genetic results said. We had to address the cancer in my bones.

Anyway, the radiologist and I discussed where to start radiation first: my pelvis or my spine. It was hard for me to decide which hurt more. My everything hurt at this point. I coughed every minute, and every cough induced pain. My back and ribs hurt so bad that it hurt to pull on pants, underwear, reach for a glass in a cabinet, drive, breathe, talk. I would need to get mapped before I could start radiation. It’s radiation planning basically. Before I left the hospital, I had an appointment for mapping the next day. This place was on their game!

The social worker met with us next. I had mentioned to someone that I had a 13-year-old son, so she brought some resources specific to him. She talked with me and my husband about the emotional rollercoaster we had experienced since finding out about the mass in my lung and diagnosis not even two weeks earlier. She addressed the feelings of helplessness my husband experiences when I’m in pain. We talked about how hard it was to have to tell my son, who has already lost his dad, that now his mom has cancer. It didn’t seem fair to him, though to play in the game of life, we all have a time limit, and we don’t have a guarantee of its length, even the doctors can’t do that. The social worker told us that she was there to support any and all of our family. It comes as part of the cancer program.

We finished our day at the hospital around 4 p.m. We were hungry and tired and overwhelmed with information. Overall, I felt disappointed that we didn’t have the genetic results back and no specific treatment plan. The doctor had assured me that I had more than a 50% chance that my cancer was caused by a genetic mutation, and that meant targeted treatment which cancer responds very well to. Nothing else made sense. I mean, none of it makes sense, really. I’m not a smoker, I’m very active, I eat a healthy diet. It didn’t seem like a cancer I had given myself by smoking or by living with excessive radon exposure. I’ve lived in a couple places that probably had radon over the last 10 years. My husband and I had joked that the mass consisted of dog hair. We wanted that to be the diagnosis. “It’s just a hair ball. That’s why you’re coughing. Here, take some mineral oil, and you’ll be fine.”

We may not have known the cause of the cancer that day. We had a plan from the doctor, pretty general one, and that was okay. I had an appointment for radiation planning. I also had an appointment with cardiology on Wednesday to evaluate my heart’s excess fluid. Looking back, all good things. In the moment, I felt sad. My husband and I went to Panera for an early dinner, some soup in bread bowls and a vanilla cinnamon roll for dessert. I cried on the way home, and he held my hand and told me it was okay. It was okay to feel how I felt, how we both felt. We’d have our answer soon.





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