Holy Bone My Ass
I never took an anatomy class, so perhaps that’s why I don’t recall ever having heard the word “sacrum” before getting the results of my PET scan two days ago. The sacrum is the triangular bone in the middle of the pelvis at the base of the spine, and it’s known as the holy bone. Many ancient cultures considered it sacred (hence the name sacrum) because it protected the reproductive organs and could resist decomposition longer than any other bone, thereby making it the source of resurrection in the afterlife. Therefore, I find it ironic that this is one of the parts of my body that is currently being invaded by cancerous cells. It seems blasphemous. But it also seems appropriate given my luck.
Back in late August/early September I noticed that my left armpit felt a little swollen and there was a dull pain. I assumed the swelling was lymphedema related to having had a lymph node removed when I was first diagnosed with breast cancer back in October 2015. Plus, I’d had a constant dull pain in that arm ever since I shattered my left elbow in 2018 and had had two surgeries on it. However, when you have pain and swelling right next to where you used to have a tumor, you get it checked out. So I did. The nurse practitioner at my oncologist’s office didn’t seem concerned by it, but she said that if I wanted to get an ultrasound for peace of mind, I could. Initially I said yes to scheduling it, but I decided against it because my bloodwork came back just fine, so I figured if my blood looked good and the nurse practitioner didn’t seem concerned, I wasn’t going to spend the money on an ultrasound.
In December I was still having some mild pain and discomfort on the left side, from my armpit to my elbow, and again I thought it was probably just a combination of lymphedema and radiating elbow pain, but I figured I should get it checked out, so I went back to the oncologist’s office and I saw the nurse practitioner, and again she didn’t feel anything that concerned her, but she said that if I wanted an ultrasound for peace of mind, I could schedule it, so I did. I had the ultrasound, and a weird lymph node (nothing too troubling looking, but just not totally normal) came up, so we scheduled a biopsy for the next day. I was scared and convinced that my cancer was back, but the biopsy didn’t show any cancer. It was checked for breast cancer and lymphoma, but all it showed was a reactive lymph node (just a node doing its little node thang and filtering out something that didn’t look right, as lymph nodes are supposed to do).
The mild swelling and discomfort continued, but again I thought: lymphedema and radiating elbow pain. In March I had my last 6-month check-in with my oncologist. March 2021 marked 5 years since my last chemo treatment, so I was considered in full remission. I cried in the doctor’s office because I was talking about a young woman who had recently experienced a recurrence of her breast cancer after having initially received a low stage diagnosis. I was reassured that I shouldn’t worry, that her cancer and mine were different. I had had the Johnson and Johnson Covid vaccine the week before, so when I pointed out my swollen lymph nodes (which were on the left side of my neck, even though I’d had the shot on my right side), I wasn’t too worried. My oncologist told me that if my lymph nodes were still swollen a week later that I should contact my primary care doctor.
I forgot about the lymph nodes. I couldn’t see them. They didn’t hurt. I continued to live with what I thought was mild lymphedema and radiating elbow pain. I had seen a lymphedema specialist after the September visit with the nurse practitioner, but I didn’t think it would do me any good to continue going. I paid a specialist $50 to measure my arm and rub it a little, so I was just, like, nah. I’ll save my money for cocktails.
A few weeks ago I started to have a mild, dry cough. It was sporadic. I felt a bit more winded than usual when I would walk up stairs, and sometimes I had a light wheeze. But then, for whatever reason, I touched the spot where those swollen lymph nodes had been back in March. They didn’t hurt, but they were hard. So I called my primary care doctor, and I saw her on Friday, June 4. She gave me a number to schedule an ultrasound, and I had the ultrasound on Wed, June 9. I was a little suspicious when the ultrasound tech said, “So, when was your last chemo treatment?” And I’m thinking, “Why do you want to know?” and then she said, “There’s actually a third spot (I could feel two hard spots that I directed her to), but that’s pretty common,” and I thought, “Common for what?”
I left the ultrasound appointment and went to a restaurant to pick up food for a mutual friend who had recently been diagnosed with Stage 4 colon cancer. I dropped off the food at her house, and as I was driving home I got a call from my primary care doc; she asked if it was an OK time to talk. “Oh shit,” I thought. The ultrasound showed some problematic areas, so she called my oncologist who arranged for a CT scan the next day. I went over to my parents’ after I spoke to my primary care doctor and told them what was going on, and my sisters and boyfriend came over and we all sat in the living room and cried and laughed (in between calls with my insurance company about getting pre-approval for the scan).
The next day I had my CT scan in the morning, and late in the afternoon I got the results (using the hospital app). There were many suspicious lymph nodes and there were small nodules in the lungs. One of the nurses at my oncologist’s office soon called and said my doctor could meet with me on Monday (this was Thursday early evening). I said, “Please tell me something now,” and she said, “It doesn’t look good.” The next day I called the oncologist’s office and left a message asking for someone to please call and talk to me, so one of the (wait for it) on-call-ogists called me, but there was really nothing he could tell me that I didn’t already know just by reading the results of the CT scan. Later that afternoon my oncologist called me. She had been on the road, but she just wanted to touch base about the CT results. There really wasn’t anything substantial she could tell me.
On Monday morning my parents and I went to see my oncologist, and again she couldn’t really tell us anything substantial . She said there was a 10% chance it was an infection (I knew it wasn’t). She said we needed a PET scan and a biopsy to determine the next steps, so she told me to schedule a PET scan on my way out of the office. When I went to schedule one with the check-out lady, there was no order in the system, so she gave me the number to call. I immediately went out to the lobby and called, but there was no order from the doctor in the system, so the PET scan couldn’t be scheduled. I was angry. I went back into the oncologist’s office and waited for the two receptionists to stop talking. I stood there with my hand on my hip. Finally, one of the women looked at me, and I asked to speak to my doctor. It was obvious I was mad. She told me that she would call for the nurse. I stood next to a middle-aged woman and said angrily to hear, “They should have been scanning me but they didn’t and now it’s in my fucking lungs!” ::I got some looks::
The receptionist called me over and handed me the phone. Frustrated, I asked the nurse when I could schedule this appointment, and she misunderstood and thought I was angry that I couldn’t get my PET scan at that very moment, and I’m, like, “No, I just need to know when I can schedule this appointment. I was told to schedule it, but there’s no order in the system. When should I schedule it? 1 hour from now? 3 hours? When?” She said give her 15 minutes. I said thank you and stormed out of the office.
We got the PET scan scheduled for Friday (this was on Monday; the waiting and the insurance are the two biggest pains in the ass when it comes to cancer). However, my sister was extremely unhappy with how things had been handled, so she made a complaint with the hospital, and voila, my PET scan and surgery consultation (for the biopsy) were scheduled for the following day (Tuesday). I spent the day alternating making phone calls to the parents of students failing my online summer school class and receiving phone calls from the hospital billing office and my insurance company about issues with pre-approval of the PET scan. At one point, someone from hospital billing called to say that I would have to pay $3680 for the PET scan if my insurance company didn’t approve it in time. So I lost my shit. “I’M FUCKING DYING HERE AND YOU DON’T EVEN CARE; YOU JUST WANT YOUR MONEY, AND I THINK THAT’S BULLSHIT!” Blah blah blah. I don’t even know what all I said but my mom gently took the phone from me and spoke to the woman (who felt really bad). I ran into the living room and screamed and then did some speed-walking laps around the first floor of the house. After my mom hung up with the lady from billing, she said that she didn’t care what it cost, I was getting the PET scan done tomorrow, and if she had to pay for it out-of-pocket she’d go to the bank and give those assholes their money in quarters. Luckily, the procedure was approved in time.
Tuesday morning I was injected with radioactive sugar so that my hungry cancer cells would light up on the PET scan. After the scan we headed to the hospital to see the surgeon. She was great, and she got us scheduled for the biopsy the following day. I went home and waited for the PET scan results. Someone from scheduling called and said I needed a Covid test before I had surgery the next day (to remove the lymph node needed for the biopsy), so Mom and I drove back up to the hospital and I got the test in the convenient drive-thru line, and then we headed back to my parents’ house. When we were about a mile away from home, the hospital called to say that I didn’t need the test. They had changed their policy and sent out a memo when I was en-route.
At 4:02 pm my phone dinged, and I knew what it was. I got on the hospital app, and there were the PET scan results. Jargon, jargon, jargon, then “multiple pulmonary nodules are present…and are highly suspicious for metastatic disease…left 10th and 3rd rib metastasis, metastasis to the sacrum and possibly L2 vertebral body” blah blah blah. I was in the kitchen working on summer school stuff when I got the results. I was in shock. I really didn’t think it would be in my bones. That just seemed too extreme. I really thought that it would just be in my lymph nodes and lungs. I walked into the family room and told my mom. She was in shock. My dad was asleep in his chair downstairs, so I went and woke him up and said, “It’s bad. You need to come upstairs.” They held me and I cried and I just repeated, “I can’t believe this is happening.”
I called my sisters and boyfriend and they all came over. My sister asked if I had heard from my oncologist yet, and I said “no.” She was livid and made another complaint to the hospital. The nurse eventually called me to say that my oncologist would call me in the morning. She did, and she said something to the effect of, “I know that someone in your family is not happy with the care that I’m providing you, but please know that I am doing my best for you and that the complaints don’t really do anything but hinder the process,” and I’m thinking, “Maybe they’re a hinderance to you, but all I know is that they got me in for my scan and surgery consultation ASAP.”
I don’t know why the biopsy didn’t show any cancer back in December. I don’t know why it was standard protocol to look at my blood every 6 months when my bloodwork always looked good. I had bloodwork done on June 4 and it was fine. I looked back at my CBC (complete blood count) from when I was first diagnosed with breast cancer in 2015 and it was fine. Why did my doctor put so much stock into my bloodwork (as opposed to scans)? I never had even just one scan in the years following my mastectomy. My oncologist said bloodwork (not scans) is standard practice for follow-ups in the first 5 years post-diagnosis. I know that anger is a common response to cancer recurrence. You want someone/somebody to blame, but really it’s just Rule #1: Life Is Unfair. I don’t want to be consumed by anger because it is not healthy. The only productive thinking will be focused on treatment.
I’m waiting on the biopsy results right now. These will tell us what kind of cancer it is (most likely it’s recurrent breast cancer). If it’s breast cancer, we need to know the hormone status (it’s easier to treat if the cancer is hormone-fed) and HER2 status (we want it to be HER2 negative; HER2 is a protein that promotes the growth of cancer cells). My original breast cancer was hormone+ and HER2-, so that was good. However, I’ve been taking Tamoxifen since 2016, and this is a drug that is supposed to suppress your body’s production of Estrogen and Progesterone (which are the hormones that feed my cancer cells). However, I’m concerned that this new round of cancer is hormone negative, or else how would those cells have been able to grow? There are no female hormones in my body to feed them (or at least there shouldn’t be any female hormones in my body if the drug is working properly). I don’t know. I’m not a doctor.
All I know is that most people who get cancer start to lose weight but I’ve just been getting fatter, so if that ain’t some bullshit, I don’t know what is.
I’ll report back with biopsy results.
*Update: Pathology came back and it’s hormone-positive metastatic breast cancer. The HER2 status needs further investigation because the initial results were inconclusive (this is common), so my lymph node is being sent to the Mayo Clinic. I’ll know in 5-10 days.
When the surgeon called to discuss the pathology, I asked why the Tamoxifen didn’t help prevent my hormone-fed tumors from growing, and she said that, unfortunately, some drugs just don’t work on certain people. Like, Aspirin doesn’t work for everybody. Luckily, there are other drugs out there that I haven’t tried. So much money has been donated to breast cancer research, and new drugs are becoming available all the time. There are medications available to me now that weren’t 5.5 years ago when I was first diagnosed.
This is a chronic disease and not a death sentence.