The Things They Don’t Prepare You For

When I was first diagnosed with MDS, I spiraled down a rabbit hole of research, most of what could be found on Google was out-of-date by about a decade. I called a friend who works in oncology to learn more. She talked me off the (figurative) ledge, gave me lots of advice from her practitioner experience, and provided me with some helpful information that was current, all of which eased some of my fears. My husband and I met with my local oncology team at Vanderbilt and learned a little more - some good, some not so good. Nick had tried to ignore the diagnosis for as long as he could before we went to that appointment, so all the information was overwhelming and made him want to punch the doctor to make him shut up. We left not feeling any better about my diagnosis.

Before we went into the meeting at Vanderbilt we had already decided to go to MD Anderson for a second opinion and to find out if there were any options that Vanderbilt did not have. So, three days later, we traveled to Houston, TX for an evaluation at MD Anderson. We learned so much more from our first meeting with my oncologist. We learned about my options in treatment. And then we returned two weeks later for my first cycle of chemotherapy infusions. I decided to participate in a clinical trial at MD Anderson that aims to target treatment for the treatment-resistant gene mutation I have. I went from knowing nothing about MDS (literally had never heard of it before I was diagnosed) to beginning treatment in six weeks time. We (mostly my husband) asked all the hard questions. We thought we were prepared for all the things cancer and treatment would throw at us. We were wrong. Luckily, I have tolerated the infusions well, with a few minor issues (random itchy patches and a high heart rate), but nothing like I was told I would experience.

What I wasn’t prepared for was losing lots of hair daily during this treatment regimen. I knew I would eventually lose it all once I begin the aggressive protocol leading into my stem cell transplant. However, I was not ready for any hair loss now. I’m on “baby” chemo, which is just a cute way of saying on a low dose of chemo. My treatment cycle is seven days of chemotherapy infusions and on the seventh day, I also receive the investigational medication via infusion. I was told I wouldn’t (shouldn’t) lose my hair yet. But, daily, I am combing out clumps of hair and I have noticed my hair has begun to look thinner. My hair has been part of my identity for so long. As vain as it sounds, I prided myself on my healthy, thick hair, so it has been a shock to look in the mirror and see how thin it is getting. I’ve started entertaining myself by shopping for head scarves, turbans, and wigs (still not sure how I feel about a wig, but we’ll see). I am even going to schedule an appointment to get fitted for a wig in Brentwood, TN, but I am still not fully mentally prepared for that yet.

I wasn’t prepared for the insanely dry skin that comes the week after the infusions. During the first cycle, it was my legs that began looking like they had developed fish scales. During the second cycle, I was already home when the palms of my hands began to peel. Luckily, this phase doesn’t last too long and it’s manageable. The itchy rashes that randomly pop up are also annoying, but again, manageable. Thankfully, my third cycle didn't bring any dry skin, so it seems that my body is getting acclimated to the treatment.

I wasn’t prepared for the doctors to tell me that two weeks into my first cycle, I would need to be put into menopause at 39 year olds. This news was devastating to both myself and Nick. What our closest family and friends already know is that we had been trying to have another baby for years (9 years to be exact). We started trying to have another baby when McKenzie was 1 year old. We suffered an early miscarriage at six weeks, after a year and a half of trying. We had to hear family tell us to hurry up because we aren’t getting any younger or it shouldn’t be that hard. It was upsetting, but we ignored it. After seeking help from my amazing OB/GYN, we finally went to a fertility clinic, which was equally amazing.

The team was incredible and so caring (if you are in Middle Tennessee and need a recommendation, let me know). We went straight into IVF and egg-banking due to my age. It wasn’t until after three rounds of egg retrievals (and hundreds of blood draws, injections, ultrasounds, anesthesia, and some many bruises on my abdomen) that I was diagnosed with MDS. All of that halted with my diagnosis. We never got to a transfer or to achieve another successful pregnancy. I was devastated at the thought of never being pregnant again and ending something that is part of my youth. But, I resigned to accepting that this will help me.

However, a couple weeks after my first cycle of chemo, I was sitting in a lab review with one of the nurse practitioners. She learned that I had not gone into menopause (I recently turned 40, so I was 39 at the time and wasn’t sure why that was so shocking). I was immediately referred to the gynecology-oncology unit to discuss a forced menopause. With chemotherapy treatment, I learned that it is preferred to do this as a way to protect the ovaries and to prevent blood levels from dropping more than they already are during a menstrual cycle. So, a couple of days later, I am at my second visit in the gynecology oncology unit, receiving a shot of Lupron. There really wasn’t much time to think about it. But, I was not prepared for the overwhelming emotions that took over when I was sitting in the exam room by myself, reading the medication handout. It was the first time I realized (well actually thought about it at least) that I would not be able to physically have another baby. When the nurse came in to prepare the injection, she tried to make jokes while I tried to hide my tears. When I received the injection, my face mask was soaked because I had silently cried the entire time. I was not prepared for the end of my period (even that I hate when it happens every month). I was not prepared for a 15 minute office visit to be that emotionally charged for me either. I called my husband while I waited the necessary time to make sure I didn’t have any negative reactions. Somehow, he knew I would be this sad. I shouldn’t be surprised, he reads people very well. He knows me so well and reads me even better. Knowing that the last nine years of trying to have another baby was unsuccessful and knowing that I definitely cannot have another baby because of cancer was extremely overwhelming.

With the forced menopause, came all of the menopausal symptoms, just a few weeks after they said it would actually start. I was told that I would start seeing the affects two weeks after the injections. After those two weeks passed, I thought “I can handle menopause. It isn’t too bad.” Well, two weeks after that, I began the symptoms (I’ll spare you the more private symptoms) - a tension headache that turned into an intense migraine for several days, sleepless nights, neck and head tension, night sweats, and hot flashes. It still isn’t as bad as I told myself it would be, but it definitely is not any fun.

I also wasn’t prepared for the quickness of treatment and the length of time away from my family. I know this is the norm for oncology, but I need to plan things out. I really didn’t get a chance to think about this either. I just had to “do.” That’s what I told our daughter when she was learning how to do her back handspring this summer - don’t think about it, just do it. If you think and dwell about it, then you start making excuses or trying to find ways to prevent something from happening. So, when my oncologist at MD Anderson said I would need to start treatment two weeks after we first met with him, we booked our place tickets and packed our suitcases to go without hesitation. Leaving Landon and McKenzie in Tennessee like that was the toughest thing I have ever done. I honestly did not know how long I would be gone with this first trip. At first we thought it would be about 30 days or shorter, but it ended being 38 days away, so I could start the second cycle. It was so hard to miss McKenzie’s last regional dance competition, miss chaperoning Landon’s class scavenger hunt field trip or McKenzie’s class field trip (their first field trips since COVID hit), miss watching their field days, miss helping Landon study for his final exams, or miss just be there to take pictures of them on their last days of school. I hated it. I am the mom that is there for everything. So I felt like I was letting them down. I have to remind myself that this is just a temporary obstacle and next year, I will be able to be there for everything. In order to be able to be at their events for a long time, I know I have to make sacrifices short term and do the hard stuff for a few months. But, acknowledging that doesn’t make this journey any easier.

Another part of this treatment I wasn’t prepared for was all the extra daily medications that I would have to take. There are so many (an anti-fungal, anti-viral, antibiotic as a prophylactic, my thyroid medicine, a beta blocker for my heart rate and blood pressure, and birth control to help regulate my hormone changes, a multivitamin and vitamin D drops). I have alarms on my phone to remind me of when I need to take them. I have a cute zipper bag to carry all of the medications around with me. It’s weird to have to keep up with this much medication. For some reason, I didn’t think about needing all of these daily medications.

Leading into the stem cell transplant, I didn’t realize all of the extra testing I have to undergo to get approval to undergo the transplant. I have pulmonary function testing, echocardiograms, dentist appointments (who knew there was an oncology dental unit), counseling evaluation, and I am sure so much more that I haven’t been told. It makes for long days when I am in Houston, but I know that it is necessary and I’m thankful they can work with my schedule so I am not away from home any longer than is needed before I actually have the transplant.

The loss of control of my life, my schedule, my normal has been the most trying for me. I need plans, I need schedules, and I need my routines. Cancer on its own is tough. It’s mentally, physically, and emotionally draining. My life now revolves around my treatment schedule and hoping to get some time to do things with my family. Putting all of the other unexpected things just makes it even more difficult. But, I am learning daily to manage it all and let go of any expectations of schedules. I’m sure this list will get longer as the process continues. If it does, I just know that I’m going to know to just go with it.

XO - Nicole