I'm strongest when I'm weak (Part 2: AI meds)

The majority of people I have spoken with, family / friends / coworkers, are under the understanding that I have finished surgery and radiation so I’m done with cancer treatments. Sadly, nothing could be further from the truth. Don’t misunderstand, I’m so happy to have those two steps behind me. But sometimes the “what comes next” goes unnoticed by those around you who don’t live it every day. As the cancer patient you look better, you are (mostly) back to your pre-cancer routine and its easy for people to view you as “back to normal”. For me that is not the case. The continuing part of my treatment incudes 5 years of AI (Aromatase Inhibitors / hormone suppressing) meds. I have tried all the meds that were options to me, Anastrozole, Letrozole, and Tamoxifen, trying to find one that I could tolerate. One that would allow me to minimize the chance of cancer returning while also allowing me to have a quality of life. This is part of that story.

When my medical oncologist first started me on Anastrozole I was hesitant but hopeful that all the rumors of the side effects were exaggerated. What I found was that there are some common side effects that a majority of people are affected with, and there are a lucky number of people who have no side effects at all. For me Anastrozole came with debilitating bone and joint pain (who ran me over?) at random times. Sometimes the pains would last for a day or two, but sometimes it lasted for days. I wanted to stay in bed when I was hurting so much, but I couldn’t get comfortable. My sleep patterns were erratic, I couldn’t hold my eyes open past 8pm most nights but then I would lie awake and stare at the walls or play on my phone while the rest of the world slept. I was exhausted due to the meds, the pains, and the erratic sleep patterns. The anxiety was uncontrolled at the beginning and lead to a few panic attacks that caught me off guard. It was all so unexpected and overwhelming and so I became emotional. I would cry for no reason and for all the reasons when things built up too much and became overwhelming. I also had mood swings, brain fog, weight gain, and some other (far more personal) side effects. If you are reading this while preparing for your 5-10 year stint of these meds please do not let my story deter you. Please know that there is an adjustment period, but you can do this! (Read on to hear me out…)

After much debate and discussion of the side effects I was experiencing, my doctor suggested trying Letrozole to see if I could tolerate it better. I did not. The anxiety was even worse, the joint and bone pain was far worse. Just everything was worse!

Next up? Tamoxifen. Nope! Not for me. I was nauseous 24/7. And not a little “queasy” either, more like ‘don’t stand between me and the bathroom’ nauseous. ALL.THE.TIME. The longer I was on the medication (hoping the side effects would settle down), the worse it got. I called my doctor and told her I had taken myself off the Tamoxifen. Again, I wanted the benefit of minimizing the chance of cancer returning but I also want to have a quality of life. Heck, at that point I felt like I just wanted to be able to leave the house without an array of anti-nausea supplements in my bag, most of which barely worked. The one that did work for me was prescription and my PCP said long term daily use of it could lead to cardiac issues. Nope, not up for that either.

So, back to Anastrozole. These three meds were, in the doctor’s opinion, the only options for me and my situation. She suggested that I first wait two weeks without the Tamoxifen before starting the Anastrozole again to be sure all the Tamoxifen associated side effects had a chance to settle down. Once I restarted the Anastrozole she suggested a handful of supplements to curb the side effects. (I’m hesitant to list these here, as this blog is not intended to give medical advice. Please consult with your doctor and be very open and honest about the side effects you are having. There are supplements and even some prescription medications that can help you find a balance.) I started the supplements and the Anastrozole and prayed for the best. I spoke to my PCP about adjusting my anxiety meds, this greatly helped with that particular side effect. Other (oncologist approved) OTC supplements have greatly helped me to manage the bone and joint pain associated with these AI meds. I believe we have finally found a good mix for me. This does not mean that I never have side effects, this means that I have gotten better at managing them. There are still days (last night for example) where I didn’t sleep well. That led to feeling weak, tired, and achy today. But I have also learned to give myself some grace on those “bad” days, and you should too! Your body is still fighting to be healthy and to avoid cancer returning and it is understandable that not every day will be a “good” day with the side effects. Learn to rest when you need to, order take out if you’re too tired to cook and clean, take a warm bubble bath when the joint pain is flared up, hydrate, and minimize stress whenever possible. For me, this has meant I needed to make some life changes as well. I bought myself a lovely insulated cup, I fill it with water every morning, and I take it with me everywhere I go. I have also had to make the difficult decision to leave a high stress job that I loved for a job that promises to give me a better work-life balance and a lower daily stress level. My common theme in these posts remains here – you CAN do this! Not everyone will have the same side effects from these meds as I did. I have spoken to many women who have very few to no side effects! Be patient, listen to your body, give yourself some grace and patience, and find the routine / supplements / lifestyle that works for you. Only you can decide what that is (with your doctor, of course) but you can absolutely do this, and you will. One last note, do not underestimate the value of a good support system. Unfortunately, not all women are blessed with a great support system but if you have one do not be afraid to lean on them in your weak moments. A good support system has helped me immensely. My husband and son have been here for every step of this journey so far, the good and the bad. When it’s a good day, we have fun. When it’s a bad day we rest. My husband has held me while I cried because I was overwhelmed and sick of feeling sick. He has been my rock. My friends and family still check in from time to time and offer comfort and support on difficult days. Sometime this cancer journey is just that, a DAILY journey. Take it day by day, or even hour by hour if you need to. Just don't stop.