Yesterday we paid tribute to the incredible life saving measures the hospital and my super doctors are doing to keep me alive (Here), what people don’t see is what happens at home.
Pheochromocytoma cancer is a 24 hour job, it doesn’t begin when you enter in the hospital doors, and it doesn’t end when you leave. You all hear me mention my husband all the time throughout my posts, well I felt it was about time I explain why. As with any chronic illness, somebody takes on the role as a caregiver, and he’s done just that, he stepped into this role seamlessly, selflessly, willingly, and whole heartedly, as many caregivers do. My husband is my life partner, my best friend, my person.
What many of you may not know, is that my husband is battling his own very serious illness in his brain, but when you are in the situation we are in, you literally have to decide – who feels better, who is more capable, and make last minute judgement calls based on that. It’s an awful way of operating, it’s not ideal, but it’s what you do when you have no choice, you carry on with your fight and you fight for each other, when he has nothing left I dig up whatever energy I have left in my bank and I switch roles and take care of him, and vice versa. Mostly though, he pushes himself to a level that I never thought possible so that I can have a chance, a small hope, a tiny possibility in prolonging my life further, so that he can enjoy his with me. That’s what your person does, they do everything in their power to keep you alive so that they can spend every second with you.
You love each other more than you could ever love yourself, in sickness and in health, till death do you part.
Serge always wanted to give my life meaning, he encouraged me to make an impact, he wanted me to be successful and know what achievement felt like, he most importantly wanted me to be able to enjoy all of the wonderful things that came with that hard work. We had such a different appreciation for what every single thing had, the adversity we overcame, we just simply wanted to come to a point where we could finally let that deep breath out and enjoy. We were close, but that never quite happened. He has always been a caregiver in some aspect, always taken the best care of me from the very beginning, that’s technically how we first started dating – him by my side during my first run in with pheochromocytoma. This time is different, when you are literally responsible for someone’s life, their well being, it’s an entirely different dynamic, one that is very demanding, and one that is often under appreciated.
On a typical day, Serge will have to wake up around 7am to start to prepare my first dose of medications, the most important ones of the day that control my blood pressure, heart rate, then my pain level, then of course my steroids that are vital to live, my nausea and heart burn medications so I don’t vomit immediately as I wake up from all of the extra catacholamines (adrenaline) in my body, my asthma pumps, etc etc..
Takes dogs out, feeds dogs, loves dogs, has coffee, has moment of silence (lol)
8am: Wakes up Sleeping Beauty, or Bride of Chucky, depending on the morning 😄 to take all of the above medications
(Sleeping beauty goes back to sleep, probably because she hasn’t slept all night due to the extra adrenaline attacks that plagued her all night, making it literally impossible for her to get any rest in the normal hours of night)
Serge now takes this time to go and run errands- while I sleep, because it’s actually dangerous sometimes for me to be left alone with my condition while I’m awake. With my adrenal insufficiency, my cortisol levels can drop suddenly and I need him there to notice so he can give me extra steroids so I don’t die. On the other hand I can have the opposite and make too much adrenaline (pheo attack) this is when my tumors secrete adrenaline into my body, which raise my blood pressure, heart rate, putting me into a crisis state, for several minutes at a time. Either way, I need him there to control the situation because in both instances I’m completely out of control of my own body, and I rely on him to get me out of crisis, (these occurrences are every day, but different severities) if it’s REALLY bad of course, we have to go to a hospital and be controlled even more drastically.
So while I’m sleeping, he does our groceries, or goes and fills my prescriptions, banking, you know, regular human things that people must do, because life doesn’t stop when you’re ill.
When I wake up, he’s always home, with a warm greeting and a beautiful smile, despite the busy morning I know he’s already had, and regardless of the stress and worry that’s hiding behind it.
At this point I may shower, often I need half way through, the heat of the shower provokes my tumors, the activity of the shower provokes my tumors, so I can’t win. Serge will come and help me finish my shower, whether it’s helping me finish washing my hair, or just to dry me off because I can’t physically bend over without falling down or vomiting, he’s there instantly to help. He sets me up in my bed so I can lay still and let the attack pass for the next 20-30 minutes, until my heart rate and blood pressure can go back down to a regular level, so I can stop shaking, my headache can dull down, my nausea can go away, my sweating can stop, he arranges the fan so that I can be comfortable, and not cry uncontrollably with pain of my beating heart attacks my chest. He puts on a brave face as he does, he rubs my back and turns off the lights and just stays quiet and calm, because he knows any noise will make it worse while this assault is happening.
Once that’s over, he helps put on a loose fitting night dress, as I can’t wear anything that touches my skin – because it hurts so much from my operations. He then helps me walk down the stairs, because most days I can’t do it myself, either because I’m too dizzy or because I just have trouble walking, and then he makes me breakfast.
Are you tired yet? I am.
He will often make my breakfast so pretty, because he knows when I have the energy to cook, I love to plate my food beautifully, and so he even takes the extra time to do this for me, just to make me smile.
By this point I’m normally so exhausted from everything that’s just happened, so anything I’ve had planned for the day, normally gets pushed to ‘tomorrow’, and now he will have to watch me carefully, because with all of the energy my body just depleted going through those pheo assaults, I’m now at risk for depleting my cortisol levels, which means I can crash at anytime.
Time for him to prepare my afternoon pills, more steroids and stuff to keep me alive and alert.
We might cuddle up and watch some Netflix, I may write on here, Serge will make sure the house is clean bit by bit while at the same time keeping an eye on me. Dishes still need to be cleaned, laundry needs to be done, floors need to be washed, surfaces need to be disinfected, dusted, bills need to be paid, meanwhile you must be a nurse, a doctor, a friend, a husband, a shoulder to cry on, a chef, a driver, and take care of yourself at the same time.
Then … Basically everything is repeated but for the second and third part of the day.
Nights are even more difficult. If you can imagine that.
This is just a glimpse into a few hours in the morning at home, this isn’t even remotely comparable to the days that Serge has to do all of this plus take me to the hospital – 3.5 hours away from home, there and back in the same day, because we can’t afford to stay in a hotel every time unless I’m receiving treatment or have back to back appointments and have no choice, it gets crazy, even the day trip is expensive, sometimes twice in one week. Which is typical for us with this disease.
Believe me when I say this… Caregivers are everything. They are why we can open our eyes in the morning, why we can fight, have a shot, have someone to cry to, have someone to share our fears, have someone to celebrate with, they are our strength, our reason, our everything.
My caregiver is my husband, and my husband is my hero.
Tell your caregiver how much you appreciate them today, because they deserve it more than anyone in the entire world.