Location: Texas, USA
Diagnosis: Acute Lymphoblastic Leukemia
It's amazing how your whole life can change overnight. Literally.
I had been feeling off for about a month – fatigue (where I could sleep 8 hours, wake up, and feel like I needed 8 more), shortness of breath all of the time (I thought maybe I just needed to get back into the gym) and bloating. Just an overall feeling of blah. On Sunday 6th August 2017 I started having pretty bad headaches and night sweats and I thought maybe I was coming down with the flu. Off and on fever and chills for the next few days and on Thursday 10th, my lymph nodes on the front and back of my head and neck had swollen so much they were the size of black cherries or golf balls. Clearly my body was fighting something, and I had waited it out long enough. At the time I was working as a nanny, and I couldn't get through reading 'Cat in the Hat' to the girls without having to stop and catch my breath. What was wrong with me? I left work that Friday at 5pm and drove straight to the local clinic. After a meeting with the doctor to discuss the multitude of symptoms I was having, tubes and tubes of blood work, an EKG and a chest x-ray I left the office at 7pm and drove home.
At 10am the next morning while doing dishes I received a phone call from the clinic saying, “we think you have Leukemia. Get to the emergency room immediately".
Cancer. Just like that I had cancer.
The doctor who was calling was not the doctor I had seen the night before. Apparently my doctor called him after I left the clinic to consult on my case and express some concerns she had with my symptoms. He explained to me that enough of my blood work had come back and that my white blood cells were off-the-charts high, and that my platelets were dangerously low so I had no clotting factor and was at risk for a spontaneous bleed. He told me that it wasn't something to wait on and that I needed to go to the hospital immediately. I got off the phone with him and within the hour my husband and I were at the hospital.
When I left my house that day I didn't know I wouldn't be home for several months. If I did I would've finished my dishes and packed a bag!
Having a blood cancer and not accepting blood transfusions complicated my case as far as the doctors were concerned. I was encouraged by my Austin oncologist to receive more specialised treatment at MD Anderson Cancer Center in Houston, Texas. Nothing could be done over the weekend to get me in, so they kept me over the weekend for observation and testing. On the Monday they discharged me and we made the 3 hour drive straight to MD Anderson. People come from all over the world to go to MD so it sometimes can take days and weeks to get in. But when it comes to ALL (Acute Lymphoblastic Leukemia) it comes on fast and hard and there's no availability in the timeline to waste any amount of time. On Monday 14th August 2017 when we arrived at MD, they pulled 20 vials of blood to run even more extensive blood work, immediately put me on IV steroids to bring my white count down and ran another chest x-ray and head CT. On Tuesday they did a bone marrow biopsy (pulled from my hip bone) to determine the genetics of my cancer, and put in a PICC line. On Thursday I decided I wanted to cut and donate my hair before I started chemo and it was destroyed (I chopped 11 inches off). And on Friday I had my first chemo infusion. I had a lumbar puncture, then they administered the other chemo drugs, one of which I had some pretty severe side effects. The week prior I was at the local clinic thinking I had the flu, and there I was a week later in a different city starting chemotherapy. I was an in-patient for a week and then back and forth every few days for labs, shots, lumbar punctures and chemo.
My second chemo was administered while Hurricane Harvey made its way towards Houston.
I was worried we would get stuck at the hospital, but fortunately we made it home that evening before the hurricane hit. I actually felt pretty good that night and the day after, so much so that I questioned if they even gave me chemo drugs or just fluids. But sure enough it finally hit my system and I felt it Sunday. As Hurricane Harvey continued to hover and maintain residence over the city of Houston for several days, my midweek labs and follow up appointments were cancelled. Friday's chemo was uncertain as the whole city wasn't fully safe to navigate due to extreme flooding and the hospital was short staffed. But the aggressive nature of ALL waits for no one, and my oncologist agreed there could be no delay in my chemo schedule. My second bone marrow aspiration following chemo #4 while incredibly painful was also incredibly exciting. It showed the dramatic decrease in the percentage of blasts (immature cells) from 91% upon diagnosis to 1%, and the minimal residual (any remaining cancer cells) came back negative as well – which meant the induction (phase 1) worked and I was in remission! Leukemia is a bit of a beast, and the chances of it coming back in days or weeks is super high if you were to stop after only one cycle – this is why treatment is continued even after remission occurs. Therefore, entering consolidation (phase 2) I continued with my treatment.
After weeks of back and forth between the insurance, the drug manufacturer and the hospital, we got approval for an additional targeted chemo drug. It was a 24/7 IV infusion administered 4 weeks on and 2 weeks off, and I was to have 5 cycles of it in addition to my other chemo drugs – this meant I got a stylish new ‘fanny pack’ (thank goodness they're back in style!). I had to go back up to the hospital every other day to get my IV bag changed as each bag was only good for 48 hours. Side effect wise, I seemed to tolerate my chemo fairly well with the exception of some pretty excruciating bone pain and muscle weakness. I would say that time flew by, but that would be a lie. Phase 2 was an incredibly long and tough 8 months (shout out to my amazing momma who was there with me for every bag change and appointment!). Since I was at the hospital literally every other day it meant I was living in Houston full-time, then would go home to Austin whenever I had a few days break. My dear husband would work to continue to support us during the week and drive 3 hours down to Houston every weekend to see me. Have I mentioned how much cancer sucks? It's not for the faint of heart that's for sure. In May of 2018 I finished my 5th cycle of the ‘fanny pack drug’, and had my PICC line removed Hurray! I had so many problems with my skin not healing with the PICC line that I had to have it moved to the other arm several months in. But the day I finally had it removed after 9 months was definitely a celebration.
June of 2018 I started maintenance chemo (phase 3) – one IV drug once a month, and the rest of the chemo drugs are pills. They start everyone out full dose and scale back as needed. They had to stop and half the dose pretty soon after I started this regime because my levels took a huge hit and I got sick. Who knew you could be hospitalised for 7 days for the common cold and fungal pneumonia! Been there, done that. Since then, I continue to go back once a month for blood work, to meet with my doctor, and a lovely dose of chemo. I also continue to take my daily and weekly chemo pills (as well as antibiotics of every flavour and variety!). Phase 3 is usually 1-2 years in length. So I'm just trucking along!
They say you don't know how strong you are until being strong is your only option. For anyone who has experienced cancer I think you can agree – I know I can.
This past year and a half has tested not only my strength, but that of my husband, our marriage, our spirituality, our families etc. I've experienced first-hand that things don't always go according to plan, and if you ask my friends... they know I ALWAYS, ALWAYS, ALWAYS have a plan!
Cancer has taught me patience, humility, empathy, how to advocate for myself, how to let things go and go with the flow, how to be strong, and how to be brave.
With that phone call ("you have cancer") nearly everything about our lives and future plans we thought we had made changed forever. Honestly nothing will ever be the same – I know I'm not – but that's not necessarily a bad thing. All of my bad days have made me grateful for the good days. The potential for other people to benefit from the new bloodless protocol based off the success of my case makes me feel encouraged.
This is by no means over. I continue to fight every day. But what seemed like an insurmountable hurdle a year and a half ago continues to be just that – a hurdle, an obstacle, a challenge – not my whole life, not my whole story, just a piece of it. It has showed me we can get through bad times and look for better ones with the love and support of God, our family, and our friends. I am infinitely grateful for where I am today.
One piece of advice:
BE POSITIVE. I'm not saying be fake... I'm saying try to find a little piece of good in each day. There are going to be days when you're down for the count, but just know those days will come and go and better days will follow. Your worst day is only ever 24 hours and when you have those days, be good to yourself and give yourself grace. It's okay to need a down day. It's okay to take care of yourself. It's okay to cry (I call my down days my ‘cancer days’). It's in those days that I reflect upon hurdles I've conquered in the past to help me stay positive and know that tomorrow is another day.
Well-meaning people (those who haven’t had cancer) may make comments such as "you're too young to be sick" – gee thanks, I'll let my cancer know. Or "you don't look sick" – that’s the amazing power of makeup and a good set of falsies. Or "I like you better with no hair/short hair" – if I chose to shave my head/cut my hair like this that would be one thing but I didn't really have a choice in the matter, and you can bet I'm growing my hair back as soon as I can! But know they mean well.
People want to help, and though they may not always say the right thing, but all of their somethings mean so much more than a whole lot of nothing.
ACCEPT HELP. You may not always feel up to something (and that's okay!). Take people up on their offers to help. Cancer is a true bonding experience and definitely helps you to see who your true friends are.
SPEAK UP. Ask all of the questions, take all of the notes, make your doctors draw pictures if necessary so you can understand (I did!). Be your own advocate. Do your research, but don't get lost in it or discouraged by it.
Everyone's cancer journey looks a little different. Make it your own. You've got this!
Disclaimer: the opinions expressed in this publication are those of the authors. They do not purport to reflect the opinions or views of Brave Collective. While the information is considered to be true and correct at the date of publication, changes in circumstances after the time of publication may impact on the accuracy of the information.