Being a sick person
How many of you know what it’s like to be a really sick person? I thought I could begin to imagine it when my mom was sick. And then last summer I had a feeling with the breast cancer because after surgery recovery was rough. But these experiences are nothing like being an actual very sick person. A person who gets visited by a minimum of 5 doctors daily. Who needs assistance to go to the bathroom and takes more pills and injections on a daily basis than I care to count. Today I needed transport to the audiology outpatient clinic for an audio gram. One of my chemo meds can be ototoxic and I’ve been having whistling and muffled sound in my left ear. To get me to the clinic I had to ride on a bed cart with a transport person because I had to have my heart rate monitor. I also had to have a nurse accompany me to watch my heart rate monitor. I have to wear a massive mask to protect me from germs and this has the effect of causing people to give you lots of space and sometimes talk about you like you are not there. “can she pivot beds or is she a carry?” “can I move this strap of her mask?”. But mostly it’s the being pushed through the halls of the hospital either in a bed or a wheelchair that makes you feel like a really sick person. You are simultaneously invisible as a person and transparent. You are a fixture of the hospital and representative of the reason why most people are there. Either to visit, care for or save sick people. Being this person means a loss of control. Things happen to you and around you but you are not really a part of it. Decisions are made and you are navigated through while the institution takes over.
The audio gram came out within the normal range with a small notch in the high frequencies. The audiologist says that this could be the difference I’m hearing and would be consistent with the ototoxicity of the chemo. We will have to follow up with hearing tests to monitor the hearing loss as the chemo continues. The ENT is also recommending that I go to the voice clinic at the hospital. My voice has been strained and hoarse since starting chemo so he did a scope to tell me that I have incomplete vocal fold closure. Thanks.
I seem to keep requiring the services of every specialist in the hospital. I’ve been visited and worked up by cardio, endocrinology and nephrology all trying to deduce why my heart rate remains so tachycardic. I have had severe orthostatic tachycardia since starting the chemo which is why I’ve been on bed rest and on assist. There is no other explanation than this is a rare autonomic neuropathy side effect from one specific chemo drug. Last week they skipped the drug because of concerns for my heart rate and this week they did the same. I have also been started on medications to lower my heart rate. It took awhile for the oncology team to agree to these medications because they wanted to find the cause of the symptoms and not just mask them. There is no cause shown and I’m not getting better so this is an attempt to lower the rate.
This also means that I did not get one of the important chemo meds last week or this week. This is frustrating because I am here in the hospital to get rid of the leukemia and I want to do everything possible. Skipping the meds is weighing risk vs benefits. The doctors don’t want to infringe on my quality of life so much that I can’t function at home but they still have a cure as the goal. There just may be some detours to get there since I can’t tolerate some of the side effects.
As it becomes more and more difficult to feel like a normal person while stuck here I have not given up. Not that a purple wig makes me “normal” but it sure is fun! Next goal is to get some makeup up in here!