I get this question a lot and 9 out of 10 times, I have no idea how to answer it. Is the person concerned about how I am (physically) at this very second or are they asking a more holistic question?
The truth is, I am not okay and I haven’t been okay for a while. From the physical side of things, don’t get me started on the infected pleural fluid that has dragged on for a month or longer. The associated fevers, dizziness and the general feeling of unwell haven’t exactly put me in the “I’m okay” circle. To make matters worse, the so-called experts on my case feel the need to point out how complicated my case is and how it’s neither black nor white but grey (I asked if changing my surname to Grey would make things less complicated – I try to find humour where I can!). What that means is that the journey to sorting out this infection has been plagued by a lot of trials and errors. Sadly, we are no closer to getting to the bottom of it a month later. The plan as at last week, is to remove the current pleurex tube as it’s become more of a nuisance than a solution and replace it with another one. Fingers crossed the ‘swap’ would go smoothly and we’d be able to drain as much of the infected fluid as possible. Hopefully, that in addition to the antibiotics I’ve been on for a few weeks would help to finally get rid of the infection.
I wonder sometimes if wanting a ‘break’ or wanting things to just be that tad easier is asking for too much. I am beyond thrilled that my current chemo regimen is working, nothing beats the relief that comes with that. What I’m struggling with are the side effects from the treatment. The drugs are very tough on the bone marrow which means my white and red blood cells suffer. The treatment cycle is supposed to be ‘two weeks on, one week off’ but that’s never happened for me because something (neutrophils, platelets or haemoglobin) keeps dipping below the allowed standard for treatment. I’ve had four blood transfusions in the last four months due to low haemoglobin. With either low neutrophils or platelets, I skip treatment for a week and hope the values go high enough by the following week so that treatment can resume. I get my blood works done on Wednesdays or Thursdays and my heart always sinks when I get the call from the nurses to inform me treatment won’t be going ahead because one or two of my neutrophils, haemoglobin or platelets is too low. I’m usually excited when I don’t get any calls as it means treatment would be going ahead. I never thought I would be excited about getting chemo but I never thought I would have stage IV cancer.
I imagine being a mother is hard enough but throw in stage IV cancer with motherhood and the struggle becomes even more real. I have been lucky to have had my mother in law with us for the last five months. She has been beyond amazing and helpful but sadly, she leaves in a week and I am scared about facing the next few weeks without her. The next few weeks would definitely be challenging but with hubby and supportive friends, I’m sure we’d be fine. If not, I will finally have an excuse to get a chef, nanny and chauffeur! 🙂
I spend a lot of time wondering why this is my life. I am just 33 years old (apparently I look half my age but that’s a topic for another day) and sometimes I just want to have typical 33 year old problems like “should I change jobs or write another professional exam or is an having an MBA the way to go? When is the best time to start trying for a second child?” And a ton of other non-critical life or death decisions but that’s not the case.
I do my best to find humour where I can, to spend time with people I love as much as possible. I do my best to get used to this new normal but sometimes I struggle; I struggle with combining being sick with being the best mother, wife, sister, cousin, daughter and friend I know I can be. I was never an overachiever but it breaks my heart to know I am not at my optimum; most things I do or can do are within the confines of this illness and that is a bitter pill to swallow time and time again.
If you ask me at this very second if I’m okay, I will say yes. I am okay because I took my analgesics to ward off the fever, my antiemetics to keep the nausea at bay and the antibiotics to fight the infection. However, if your question is more targeted at how I am in myself, I’m afraid I am not okay. I am still struggling with adjusting to the reality of my new normal and today it is that lil bit harder.
I have been told how strong I am so I know I will dig deep and find the strength and resilience to push on. Don’t ask me how I am today because you’ve got your answer. However, don’t be afraid to ask me tomorrow because I hope to be able to say fine.