procedures

Comedy of Errors

Now that I’m past the actual surgery, I want to document the crazy that happened around it. I was a ball of stress. Thank goodness my family was there to talk me through it and help me manage the nerves.

Tuesday: I went to my oncologist’s office to do labs. Nothing unusual as I’ve had them done dozens of times in the last six months. While I was there, the surgeon’s office called. They lost my preauthorization for the surgery. I spent an hour on the phone trying to get a copy so I could email it over to them.

Wednesday: Back at the oncologist’s office. She explained that we are waiting on pathology reports. If they find cancer in the tissue that is removed, then we are discussing more chemo. Every step of the way has come with caveats, so I asked her straight out about my prognosis. “Unfortunately, TNBC is very aggressive,” she said. “Even with your treatment and having this surgery, there is still a 50% chance it will return.” Not what I wanted to hear. After all the pain and tears of the last six months, I was hoping for more. 1 in 10. Even 1 in 5. But 1 in 2? My life just became a roulette wheel, and I started spinning.

Labs looked okay, but they were still waiting for cortisol results. Later that night, a doctor called me at home. My cortisol levels were dangerously low. I would need to take the emergency prescription they had given me the month before – a double dose Thursday and Friday before surgery and the hospital would administer it via IV. Ideally, they would like the levels to be better, but the team agreed that postponing surgery was not an option.

Thursday: I got a call in the morning that they had forgotten to schedule my scan to find and mark lymph nodes. In order to go ahead with the surgery Friday I would need to be at the hospital at 3 pm, fasting for 4 hours before. They would inject the radioactive dye into my breast and mark the sentinel node. I scrambled to rearrange my schedule and ate early so that I would be ready. As soon as I finished eating, the phone rang. The doctor doing the procedure was leaving early. I needed to be at the hospital by 1 pm instead. The girl who called was laughing and talking to someone else in the background and I started to spiral. It seemed so disorganized and unprofessional. I told her I just ate, but she said it was fine. It had to be done that day.

When I got to the hospital and checked in, they sent me to radiology. The woman at that desk was very rude and refused to take my paperwork because I didn’t have printed lab orders. I explained that the hospital had called, so I didn’t have any paperwork. She sent me back to registration. Five minutes of phone calls and the girl there finally figured it out. She was holding my order in her hand but told me to go back without it. I asked to take it “just in case” but she said no and shredded it. As soon as I got back to radiology it was the same story – no paperwork, no check in. Lucky, I saw the tech that did my last nuclear dye procedure in the back. He was telling them he had an emergency patient coming in, so I was able to flag him down. Again, the disorganization and lack of communication on the hospital’s part was making me very nervous.

EDIT: When I got home, our air conditioning was off. They ended up replacing parts to fix it while I was in the hospital.

Friday: When I got up to get ready for the hospital (shower – no lotion, deodorant, makeup, cream or powder of any kind) we didn’t have hot water. The cold shower made me super grumpy. They ended up having to replace my hot water heater while I was in the hospital.

6am check in for 8 am surgery. The surgical team was fantastic. I had a list of questions for my surgeon, but she addressed them all before I even had a chance to bring them up. Her confidence made me feel more confident. My husband and one of my daughters stayed with me until I was ready to go back. My nurse said that the surgery would only be four hours – less than we were expecting. The plan was for them to go home, and the nurses would call when I got out of the operating room. My time in the recovery room would give them a chance to drive back and we would meet in the hospital room where I would stay overnight.

All I remember from recovery is the nurse telling me how sorry they were, but they couldn’t get ahold of my family. No one was answering. I felt so alone and started imagining the worst. What could have possibly happened in the last few hours that was so bad no one was there for me? As they wheeled me to the regular hospital room, I saw Mike and my daughter waiting and a huge wave of relief rolled over me. It was the BEST feeling, just knowing that they were ok. It turns out the staff had been calling MY phone (on Do Not Disturb in my bag) instead of HIS phone. The surgery had lasted a little over seven hours. Since they hadn’t heard anything, they came back just in case. Thank goodness.

I had a lot of visitors that night and got pretty tired so went to sleep early. The night nurses were great. I did take some pain meds about 11:30 pm, but other than that the night was uneventful.

Saturday: I could feel a lot of pressure and a little pain returning in the morning. A nursing assistant came in at 8 am to introduce himself and I asked for some more pain medicine. A few more visitors and more waiting and I still hadn’t gotten anything. By 9:30 I was in tears. I told Mike that I was going to try and go to the bathroom. I would call the nurse from the bathroom to help me and ask for pain meds again.

EDIT: Around 10 am I found a broken piece of plastic in my mouth next to my teeth. I’m assuming it was from being intubated?

They had installed a second seat over the toilet to make it higher and it wasn’t lined up correctly. When I peed, it splashed all over my socks and formed a puddle at my feet. I was so embarrassed. I pulled the cord for the nurse, but the same (male) assistant came instead. He just stood there looking at me, with a disgusted look on his face. Made no move to help. I was stuck halfway up and couldn’t use my arms to pull myself the rest of the way. My legs were shaking and I was so uncomfortable. Mike had to ask him again to help and he said he would go look for someone to clean it up and left.

Poor Mike had to help me to the bed, take off my soiled socks and throw them away and clean me up the best he could. We had to ask for new socks a couple of times. When he finally brought them, we asked about the meds again and he said he forgot. Sorry.

The nurse came in and kept apologizing for the delay. I was just happy to get some relief. When my daughter (a nursing student) arrived, she was upset that they hadn’t checked me at all or emptied my drains so she asked the nurse to take care of it. The hurse spilled the cup of bloody fluid all over my bed so I had to get up so that she could change it. After stripping the bed, she got a call and had to leave. The assistant came back, fumbled with the bed and finally my daughter made it for me so I could lay back down. He was telling us what a “shithole” the hospital was and how much he hated it and he wanted to go home early.

Two hours went by and no one had come to clean the bathroom. I had visitors and had to tell them not to use the bathroom in my room. We asked the assistant again, but he shrugged it off.

FIVE HOURS LATER I needed to pee so bad! I ended up walking down the hall to the waiting room to use the visitor’s bathroom. When I walked back, the head nurse asked what was going on. Needless to say, my bathroom got cleaned right away. I was so ready to leave that place!!!

The surgeon was great and cleared me to leave. She said she put in the orders and my prescription. I got the notification from my pharmacy that my prescription was ready an hour later. Still waiting. Another hour went by. The nurses were laughing and talking outside my room. It turns out they had ‘forgotten’ about my discharge papers because they were so busy. Another nurse blamed the surgeon and said she didn’t turn the paperwork in. I have a hard time believing that.

I weighed myself at home before I left for surgery and came in at 220. At the hospital, I weighed 215. I think maybe the scales were calibrated differently because the weights were taken in the same clothes about 2 hours apart. When I got home, I weighed 205. So, 15 pounds lighter!! That’s crazy. I still haven’t looked at the incisions. The doctor said I could take a shower today or wait to take everything off at her office tomorrow. Let’s see how brave I am.

Overall, even though I had a hard time dealing with hospital staff, my experience with the actual surgery was a good one. I am thrilled to have the cancer out of my body. Life is good.

{“key”:”al1pro”}

DMX

Busy week ahead. Tuesday, I go for labs. Wednesday, I meet with the oncologist and get my first stand-alone infusion of Keytruda. Friday, I have surgery.

Double mastectomy.

The surgeon said for my family not to wait at the hospital because it will likely be an eight-hour surgery. I will be spending the night and going home Saturday (barring any complications). I’m so nervous about it – not really the surgery itself because I will be out of it. But, I’m scared about my recovery, possible complications and how difficult it will be on my family. From all the stories I’ve read online, the surgery seems very much like chemo: different for everyone. Some people recover quickly and have fantastic results. Others struggle and their results are less than ideal. Since I’m going flat, I’m hoping that this will be a one and done surgery without the need for revision later.

Lumpectomy was an option, since the cancer was confined to my right breast and the tumor is smaller. However, after weighing everything out I decided that a double mastectomy would be the best choice for me.

  • According to the surgeon, mastectomy and lumpectomy have similar survival rates. However, lumpectomy has a slightly higher recurrence rate. That means the possibility of more treatment and additional surgery is higher for lumpectomy. No thank you.
  • My breasts are very large and I don’t like the idea of having one smaller and being lopsided. I already struggle with finding clothes and bras that fit.
  • My breasts are also very dense. Every mammogram I’ve ever had has required a follow up ultrasound. My oncologist said that with a lumpectomy I would have mammograms every 3 months for two years and every 6 months for the following three years. That sounds like a lot of appointments and follow ups and anxiety.
  • A lumpectomy would also require radiation – eight weeks, five days a week for a total of 40 treatments.
  • Finally, I have insurance right now but I’m not 100% confident that I will be able to keep that insurance long term. There is a very real possibility that six months or a year from now I will not be able to pay for additional testing, scans or treatment. So, I need to set myself up for success and do as much as I can to minimize future costs.

Even though I know I’ve made the best decision for me, I’m still scared. Everything about this cancer diagnosis and the treatment has been overwhelming. I can’t even think about what I’ve been through or what I still have left. I feel paralyzed, like a deer in headlights.

If you are religious, say a little prayer for me. If you aren’t, send some good vibes my way. I can use all the positivity I can get!

Major Milestone and Minor Changes

Yay!!! Yesterday was my last chemotherapy treatment. 16 rounds down. I can’t believe I made it through. It felt like time was moving so slowly, just endless days stretching out with nothing to fill them but pain and worry. I’m nowhere close to the end of treatment, but for now I’m going to celebrate that this portion is done. I did it.

Ariel, Mikal Jade, Echo and Mike were able to come and watch me ring the bell. Everyone else was either in school, working or out of town. Still, the amount of love I felt was amazing. I am grateful to have such a supportive and caring family. I know not everyone on this journey is as lucky, so I am very blessed.

Yesterday I also met with my oncologist about my treatment plan moving forward. There were a few minor changes.

Originally, I was going to take a 4-6 week break to recover from chemo before surgery and another 6 weeks of recovery after – followed by six months of Keytruda. Now, my oncologist doesn’t feel it is wise to take a break so is scheduling my first dose of standalone Keytruda for June 18. She also increased the length of treatment from six months to one year. Yikes.

A couple weeks ago I got the appointment for my follow up breast MRI for June 25. The oncologist said they were booked and that was the earliest appointment I could get. When I called the facility, they said that they didn’t keep a waiting list for cancelations but that I could call back every morning to check for open slots. So, that’s what I’ve been doing. When I met with my surgeon this morning, she said that wait was unacceptable. After just a few minutes her assistant had me scheduled for the MRI tomorrow morning! And my surgery (double mastectomy) is scheduled for June 20.

Deep breath.

So, what I am still waiting on? So far, I haven’t had any issues with my lymph nodes and am expecting that to continue. However, if anything looks suspicious on the MRI I will go in to have a biopsy before surgery. If they need to be removed, it will be less invasive to do everything at once. I really want to avoid a second surgery if possible. After surgery, they will send the tissue off to get tested. We are hoping for pCR (pathological complete response). If I achieve that, it will mean that the cancer is gone and my long term success is more likely. If any cancer remains, we will have to discuss the possibility of more chemo.

I am excited to move on to the next step but still feeling some anxiety about the unknown.

Rough week.

a week ago…

I didn’t have treatment last week due to low WBC count. I was tired, but not exhausted. Every day felt closer to a good day, like if I could just rest a little I would wake up feeling fantastic. I didn’t, of course. But it was a hopeful week.

Monday I went for treatment and any thought of feeling ok went right out the window. This week has been ROUGH to say the least. It didn’t help that I had a colonoscopy to prep for. That went well. Now I’m up at 2:30 am in pain and unable to sleep. Hungry, but nauseous. Terrible headache.

I keep reminding myself that this too shall pass. Nothing lasts forever.

this system is broken

Insurance is so frustrating to deal with. My doctor ordered an MRI, two CT scans and a bone scan in early December. The MRI was approved, but the other three were denied. I filed an appeal on December 16. They said that I would receive proof of appeal in the mail but that they would not notify my doctor. Any additional documentation supporting my claim, however, should come directly from the doctor and not from me.

It has been over three weeks, and I have received nothing.

I called today and was told that there was no appeal. After an hour on the phone, she finally found my appeal and said that it had already been closed. After review, they reversed their decision and decided to approve the tests. BUT, they had to be completed within a certain time frame.

I told her I never received that information, and she said that notifying me was not necessary. So, no update from them at all. No letter in the mail, no email, no call, no notification to my doctor. How am I supposed to know to schedule the tests? What is their time frame? I requested written confirmation, and she said they were unable to provide that.

I called my doctor, and their system still shows the tests as denied. They are going to try and reauthorize and let me know.

Can you imagine the number of tests and procedures that the insurance company doesn’t have to cover simply because they make the process so difficult to navigate?

Chemo Port

I had my chemo port put in last Wednesday. It was an easy procedure since I was under general anesthesia. The surgery lasted almost two hours, but with prep and recovery I was at the hospital for six hours. Recovery has been easy with no complications. In case you are scheduled for this procedure and don’t know what to expect, this is my port the day after surgery.

Honestly, my neck hurt worse than the port in my chest. One more step forward…