Bump in the Road (part 7)

March 12, 2020, my mom took me to the salon before it opened to have my head shaved. I was told it would take about 10-14 days for my hair to start falling out and I was at the 9-day mark. Instead of having big clumps of hair falling out, I opted to shave my hair. My stylist let me come in before they opened for the day to give me some privacy and to help protect my immune system from germs. It was 2020 after all and we had no idea that our world was about to be turned upside down again. (Would that make it right side up again?)

So, like many women, I have struggled with my body image. I had gained weight slowly over time and was sitting at the heaviest I had ever been. So even though I wasn't thinking I was a hot mama there were 3 things I liked about myself physically: (1) my boobs - they were pretty good, (2) my hair - it was thick and wavy, it was medium length though within the previous 2 years, I had had it as long as my waist and as short as my chin, and (3) my freckles - I've always liked my freckles, thought they were just kind of cute.

I had already lost my breasts. They had been replaced with adolescent-sized nipple-less bumps with enormous scars that looked like upside-down "T"s.

Now, I was about to lose my hair. I told myself over and over that it was just hair. It would grow back. It's just hair.

Before

Bye-bye beautiful hair

After - rocking the shaved head

And that was that. It was done. I think I rocked the shaved-head look. I feel like it gave me a little bit of a tough-edgy vibe.

Later that day, my kids were sent home from school and the Governor shut down our state for 2 weeks to flatten the curve. 

March 17 was my next chemotherapy appointment. Hospitals were essentially on lockdown. I could go for my infusion, but I had to go alone. No support persons were allowed unless I was no longer ambulatory. I could walk on my own, so I went in alone. I packed my bag with my blanket, a book, my iPad, my phone, my breath mints, and my husband dropped me off at the entrance to the Cancer Center. 

I would do three infusions on my own to complete the 4 doses of the A/C drug combination. I continued to need lots of rest, I felt terrible, didn't experience a ton of nausea, though there was some. I would sleep the rest of the day on the Tuesdays of the infusion (so emotionally and mentally draining), feel OK until late Friday, then I would spend the weekend being pretty miserable. Perk back up by Tuesday of the non-infusion weeks and be OK until the next infusion.

My stubble from shaving down my hair fell out in a painful process over a couple of days. What a mess! I think it would've been better to just leave it long and let it fall out like that - at least it would've been easier to clean up instead of all the tiny hairs everywhere. My scalp hurt badly during that time. It was a feeling of having my hair brushed in the wrong direction. So odd and painful. The shaved head stubble look is much different from bald from having your hair fall out. 

After my 4th round of A/C I was pretty sick and ended up throwing my back out. I could barely breathe. I had a couple of ribs out of place making it difficult to expand my chest with each breath. I had pain radiating down my left leg and I couldn't turn my head because I had pinched something in my neck. What a mess I was!

I was able to get in to the chiropractor (even though the world was shut down - it was April 21) and get adjusted. I felt so much better so quickly, but my left leg still hurt. It felt like it was always all cramped up in my calf. I had mentioned it to my oncologist during a video appointment, but he said it was just from my decreased physical activity and I should try to walk more and stretch. I had been doing that for a couple of weeks at this point, but on April 23rd my leg was swollen and not quite the right color. I called my family doctor. He got on a video call with me, took one look at my leg, and sent me to the ER. He called ahead to tell them I was coming and that I was a cancer patient so I wouldn't have to wait. He suspected I had a DVT (Deep Vein Thrombosis) in my leg. 

My husband and kids dropped me off at the ER - in April 2020, at the height of COVID terror. I went in alone, was taken back quickly, and put in the farthest room away from everyone in a super quiet area of the ER. I had an ultrasound done on my leg and they confirmed that I had, not 1, not 2, but 8 (EIGHT!!) DVTs in my left leg. 

DVTs can kill you. I was very lucky. Again.

I was put on blood thinners, told to keep my leg elevated and sent home.

And in truly no-rest-for-the-weary fashion, I had chemo coming up on Tuesday.

Bump in the Road (part 6)

My Medical Oncologist, Dr. H, wanted to send me for a couple of tests to confirm a Stage 3a diagnosis and ensure Stage 4 wasn't the reality. I was terrified. No one had mentioned the possibility of Stage 4 cancer. At this time, Stage 4 cancer can't be cured, it can only be managed. Dr. H sent me for a Bone Scan and a CT scan. So 2 days after first meeting Dr. H, and 2 weeks and 2 days after a bilateral mastectomy, we drove an hour away for a Bone Scan at the nearest location that could do it so quickly. A Bone Scan involves injecting a tracing dye, waiting a bit, then returning to be scanned. The wait allows the dye to find any cancer hiding out in your bones and light it up to be picked up on the scan. 3 days later I went for the CT scan of my chest, abdomen & pelvis. That involved drinking a terrible liquid quickly, waiting, then going back for a scan. 

Once results were in that all was clear, 4 days later I went for an Echocardiogram to make sure my heart was strong enough to handle chemotherapy. It was. So surgery to place a port in my chest was scheduled for a couple days later., February 27. The port was placed in my right chest wall and a small incision was also made in my right neck. Whoo boy did that one hurt when I woke up!

Port surgery

March 2, I went for a chemo teach session with the nurse at my oncologist's office. She went through what to expect, how to prepare for each chemo session (lidocaine lotion over the port to reduce pain with access), what medications both prescription and over-the-counter I would need to take & when. It was so much information. I ended up making a medication log to ensure I didn't forget anything important. I also went to the pharmacy to pick up all the prescriptions and buy all the supplements and OTC meds I needed.

March 3, 2020 was my first chemotherapy infusion. 

My husband took me. His plan was to take me to this first infusion, then let a rotation of my friends, mom, and sister take me to these marathon sessions. I'm told it is helpful for the patient to have a supportive person with you for encouragement, distraction, and overall emotional support. I mean, as the patient, I know what is at stake and it was comforting to have people who love me surrounding me as my brain swims with dark thoughts.

At the infusion, it didn't kick off with the chemo drugs immediately. I had to have several pre-meds. Some steroids and some anti-nausea medications. Everything was going smoothly and I was getting my last pre-med. The nurse set up the bag of anti-nausea medicine, a very common drug called Emend, and stepped away to order the chemo to be mixed for me. My husband, at the same time asked if I was OK, and he stepped away to use the restroom. I watched my husband disappear around the corner, the nurse pulled the curtain closed and stepped away.

Let's go!!

Immediately, I didn't feel right. I felt hot and tingly, I couldn't breathe no breath was going in or out. I couldn't talk or yell. I couldn't see as the room started going dark. There I was behind a curtain where no one could see me and no one would be back for a few minutes.

I realized I was about to lose consciousness and the thought rushed into my head to throw myself out of the reclining chair I was in so they might hear me fall. I started pitching forward in my chair as things went dark and suddenly the call button was in my hand. I hadn't been given the call button, I don't recall seeing it at all before that moment. But I managed to press it as I lost consciousness.

When my husband came back from the restroom a minute later, I was surrounded by nurses and aides, they were administering medicines into my IV/port; they had a breathing bag over my face breathing for me; they had a cool, wet cloth over my forehead and there was a lot of commotion & shouting.

I was allergic to the Emend (a common anti-nausea drug) and had experienced anaphylaxis.

They were able to rescue me. They called my doctor who said that, obviously, I wouldn't be getting that anti-nausea drug and I could choose if I wanted to continue with the chemo today or reschedule for another day after all that trauma.

I chose to move ahead. I had already done all the other pre-meds. I was already there. I didn't want to delay. Bring on the red-devil.

Let's still go, but please don't kill me

The rest of the infusion was uneventful. I finished it up and headed home. I didn't feel terrible immediately, but knew it could take a few days before it started affecting me. I was mostly just exhausted from everything that day. By the weekend, I was really tied and felt pretty "punk", not nauseated, but not good. I slept as much as I could.

After getting home from the first infusion, I found out that my husband had called my mom when everything happened at the infusion and she called my group of girlfriends and asked them all to start praying. My dad had been in the cancer center when I was getting my infusion. He was at an appointment with his oncologist (he had leukemia) and as he was there with his doctor, he jumped up and said he had to go - something was wrong with his daughter who was 2 floors below getting her chemotherapy and he needed to get down there to pray for me. No one had called him yet. He didn't have any way to know something was wrong except the Holy Spirit spoke to him. He ran down and stood outside the infusion center praying and a nurse asked him if he needed help. He told her I was in there getting my infusion and something was wrong so he was praying. A few minutes later my mom called him to tell him what was going on and he told her he was already standing outside the doors praying. He already knew. Praise God - He is always watching out for me!