Advanced Surgeries were complete and now it was time to finish out my full year of trastuzumab. I figured by this time; I was in the clear. I was finally healed from all my surgeries; my hair was coming back, and I was feeling pretty good. The only days I was really tired were infusion days, but I bounced back fairly quickly.

I had a routine echo and went about my business until I got the result. My ejection fraction had tanked! Again, I was the first to receive the results and immediately got in touch with my oncologist. She asked me about symptoms and when I really thought about it, I guess I did have some. I felt fairly tired. It was hard for me to do anything that was a cardiovascular challenge. Walking up the steps in the football stadium was a new challenge, something that I had no issue with before. I had a strange, almost pulsing sensation in my neck that I couldn’t explain. I had chalked up most of this to just trying to recover and get back in shape after the chemo and surgeries. She let me know we would be holding the next infusion and my next step was to meet my new cardiologist. Hooray!

Cardio-oncology is a newer program within academic oncology centers. Even a large cancer center like the one I was receiving treatment in has a hard time keeping this type of program going with regular staff. This particular cardiologist was fairly new in the position but came highly recommended. We talked about what was going on and the next steps. We were going to hold my trastuzumab, add THREE more medications to my daily regimen and repeat my echo in a few weeks. He explained that this was common, and that my ejection fraction would likely return to normal. We would do the tests more frequently once I was able to restart and continue close follow-up.

Ok, great, so treatment is now on hold and my “year” just got a little longer. Like the rest of it, I took things in stride and waited patiently for my heart to decide to start pumping efficiently again. After a couple of weeks, I had my repeat echo and my ejection fraction was back to normal! Luckily, I only missed one treatment, so in the grand scheme of things an extra three weeks wasn’t a big deal.

I was geared up and ready for infusion day. The nurse accessed my port but was having a hard time getting blood return. After some magic TPA, it seemed to be working and I was on my way. Fast forward to the next infusion, and the magic TPA didn’t work. Still no blood return. My nurse gets all the credit, she had some amazing tricks up her sleeve to get my port to work. I raised arms, coughed, did all sorts of acrobatics and it finally had blood return and I was able to get my infusion. Fast forward again, and no matter what we did my port did NOT work. At this point, my veins were still shot but we decided to give a peripheral line the good college try. A few sticks later, my nurse finally found a good spot and once again I was on my way. My next visit would be a trip back to interventional radiology for port removal.

Of course, I made the mistake of watching videos about port removals. It was going to be done without any sedation which really frightened me. Fun fact, the videos show a fairly traumatic looking process (pro-tip: do not watch procedure videos prior to planned procedure). I was NOT excited about the process, but knew I needed to get it removed.

Port removal day was here, I was a nervous wreck but had my knight in shining armor (AKA my husband) with me. I was rolled back into the suite, they turned on some good music and numbed me up. It was just a few minutes worth of pain from the numbing shots, but then it was removed and I was glued back up and sent on my way. One more scar, but at this point what did it matter?  I finished up my infusions shortly after. After the last one was done, I took a celebratory picture of my infusion pump that said “infusion complete” and did a little sigh of relief while looking at my husband, still sitting there by my chair and cracked a little smile. By this time, I had the same nurse for most of my treatments. She was doing a little celebration too, but then suddenly, I just broke down crying. I don’t know if it was relief, sadness, anxiety, everything I had bottled up inside while putting on a happy face? I hugged her, and we both cried. All I could muster was a “thank you.” I just hope she knew how much seeing her every three weeks helped me. We did the “hope to never see you again” salutation and walked out of the infusion room.

Now the 5 years of Tamoxifen

Or so I thought….

I was about year in with my 5 year tamoxifen journey. I had started it shortly after surgery and was tolerating it fairly well. My oncologist celebrated one year down with me then started asking me questions about side effects. The hot flashes were minimal, I felt good, my heart was fine. I  did have some random hot flashes when I had a beer, but overall it was well tolerated. I mentioned; kind of off the cuff, that I was having some changes with my monthly cycle. Knowing what I know about tamoxifen, I figured it was playing games with my endometrium. She set me up for an ultrasound, so I had to go back to the same place where I was diagnosed. Talk about a little PTSD…

The tech was doing her thing and asked if I had any side pain. I said no. Then came the question about a history of any ovarian cysts? I said no. She finished up and I went on my way. The radiologist reviewed it quickly and BAM, a 10 CM CYST was found on my left ovary! Everyone was amazed that I didn’t have any pain. My gynecologist, who had been tracking me and keeping her eye on the process called to set me up for a biopsy and run some additional tests to see what we needed to do. I had an appointment,
but I thought it was just going to be a “let’s talk about things” kind of visit. NOPE!

I will spare you the details, but an endometrial biopsy is NOT FUN! Again, we waited for results, got another ultrasound and the warning that if I had any left sided pain I needed to go immediately to the ER. A couple of weeks went by, path still wasn’t back but at the end of my workday one day, I had noticed I was having some twinges on my left side. The twinges turned into
waves of pain, which turned into sustained pain and I knew an ER visit was in my future. I arranged to get my kids to my parents and waited for my husband to get home from work. Now I have had two children, the second without the benefits of an epidural so I know pain. THIS WAS WORSE. We went to the ER. I was triaged fairly quickly, and my gynecologist had called ahead to order some tests. The ER was full of patients, they had no beds, the hospital was full and there were 6 ambulances in the bay. We weren’t going to be seen anytime soon. They gave me some IV pain meds (didn’t touch the pain at all), another ultrasound and we waited. I paced the ER waiting room floor to try and get some relief. My gynecologist called me and said that the on-call doc from her service was going to come over and see me. Talk about service!

By now, I was feeling better. The pain had subsided and I felt comfortable going home. A night in the ER wasn’t exactly the most fun. My gynecologist called me and let me know the ultrasound was negative for any issues but wanted someone to give me an eyeball test before we left. A lovely, kind doctor SAW ME IN THE ER WAITING ROOM! HE pushed on my belly, explained that they were going to schedule me for surgery later in the week and that he felt comfortable letting me go home. Later that week, I was back in the OR for a bilateral salpingo-oophorectomy with hysteroscopy. It was all done laparoscopically so recovery was by in large quick. But, I was in instant menopause and after a couple of weeks I was put on exemestane.
I noticed an instant change after this last surgery. I was grumpy, had hot flashes but was trying to manage. My husband and I came up with a code word for him if I was getting too over the top and grouchy. Luckily, either by his own wisdom or things having actually calmed down, he hasn’t needed to use it (he’s a smart guy).

Here we are in present day. I’ve been on exemestane for a couple of months now. A good portion of my hair that had finally grown back fell out again. Every joint in my body aches (a very common side effect of exemestane) and I feel like I’m 80 years old every time I try to get up. I feel like I lost a little bit of that spark I had and am searching to get it back. I know it will take time, and I know I was one of the lucky ones.

For those of you still keeping up, I just wanted to say thank you for all that you do to care for Veterans with cancer. Going through this experience has definitely changed the way I practice as an Oncology pharmacist. I know what neuropathy feels like. I know what being loaded up on a ton of new meds feels like. I know what trying to navigate through a complicated healthcare system looks like. Most of all, I know what it means to have a health care TEAM looking out for my wellbeing. Yes, no system is perfect. There were tons of headaches and miscommunications along the way. However, the personal check-ins from my oncologist, the HUGS from my doctors and nurses and the overall sense of trust and compassion from my team made all of the difference.

Now when I’m back in the clinic, I have a different perspective. I saw how attitudes and stresses among the staff made me feel as a patient sitting in the chair. I am extra careful to put on a happy face (even behind a mask) and spend that extra amount of time to make sure the Veteran is heard and understands what’s going on. I keep my “bad day” for inside my office. No one is having a worse day than that person sitting in an infusion chair, and they don’t need to hear about how I’m mad about a printer or late labs slowing down my pharmacy process. I am mindful of what an “extra stick” for labs feels like. I remember how long it takes to get drugs delivered on a busy day and what that feels like sitting in an uncomfortable, cold room. I know what it feels like to wait on orders to be put in, still sitting in that chair. If there is one thing that I can do in clinic that will keep the day smooth for that Veteran, I will try my best. I hate that cancer happened to me. Yes, it wasn’t fair but it was definitely a wake-up call about my priorities and a new lesson on love for life. I couldn’t have done it without my family. And to my knight in shining armor-I love you.

Thanks for listening.

-Kourtney