When I was a practicing speech pathologist I worked in the medical setting, primarily in acute care and inpatient rehab. Most of my patients had been through bad accidents, strokes, surgeries, cancer treatment, heart complications or other types of trauma that affected the neurological pathways involved in communication and swallowing.
Several times a week, if not daily, I provided pep talks to a patient or his/her family members that for every step forward, there would be steps backward. I helped them through the initial weeks when there were more bad days than good days. I gave them statistics and education to help them understand the goal which was that eventually, the patient would have more positive than negative days.
I had that conversation so many times with so many people. I always cared about my patients and their families so my words of encouragement came from my heart. My ability to provide those pep talks also came from clinical practice and years of watching patients heal. Every passing year of practice increased my overall understanding that (in most cases) that is how the healing happens: it starts off with a bunch of bad days interspersed with an occasional good day. Slowly and surely, most patients go through the hills and valleys and come out on the side of more positive than negative days.
The other thing I used to tell the family members was to keep a daily journal and make a quick note on how the patient did that day, because progress is so slow and hard to track.
Right now, I am in that place.
In the big picture, I have made a lot of progress. However, a setback sent me to the ER yesterday where I found myself looking at my arm bracelet thinking “I don’t want to be a person who has spent so much time in the hospital, but I am and it seems like no amount of praying or positive thinking has kept me out of this routine”. I felt totally defeated and I don’t fall to defeat often.
There are a lot of side effects of my new chemotherapy and I am finally starting to adjust to the GI side effects (thank you God).
In addition to GI hemorrhaging, which has been of concern the past 2 months, possible side effects include: heart attack, Pulmonary Embolism, Pulmonary Edema, CHF, Pneumonia (and other things). Thus, when you read about my medicine, there are lots of notifications to call your oncologist or get to the ER if you experience chest pain or shortness of breath.
I waited 5 days.
I waited because I have a history of crohn’s and leukemia and many ER trips and hospitalizations have taught me that not all things are emergent. I think another reason I waited is because it is hard to tell what qualifies as severe since I have spent the past 4 months in an ongoing moderate-severe state.
The left sided chest pain and shortness of breath started Friday night. The thing with crohn’s is that it can make your body hurt all over and cause all kinds of weird symptoms. So I thought it was the crohn’s making my chest hurt—that maybe my intestines were inflamed and pressing against my lung. The pain got progressively worse over the weekend to the point that I flinched whenever my husband tried to hug me.
I was definitely problem solving on some level because I started taking the diuretic from the oncologist “just in case I was getting fluid on my heart”–but I continued to verbalize that it was my stomach that was hurting (denial, is amazing).
It was my birthday weekend and my immediate family came over on Sunday to celebrate. I could barely eat or stay awake. My niece and sister asked if I had a fever because they said I felt warm but I had not checked my temp, I just felt so tired and I was in so much chest (aka “stomach”) pain that I could hardly breathe.
Monday morning at 6:00, the piercing chest pain was radiating down my left arm and my back, up my neck. I called the oncologist and she sent me to the ER where they worked me up for all kinds of heart complications, pulmonary embolism and other things.
I was diagnosed with bronchitis/pneumonitis and I will take that diagnosis over the other options any day.
And while that might seem like an obvious moment of, “great news, move on” to anyone. It has been really hard for me.
I feel numb and deflated.
I am having such a hard time seeing a future, even though I must believe that there is a future.
It is hard to be a patient. I don’t understand why I have had a tough medical course since my late 20’s. I do so many things “right”. I follow healthy diets and stay hydrated, my faith is sincere and strong, I (usually, this post is not a good example) maintain positive thoughts, I take the medications the way my doctors prescribe them…I really do all the “things” that everyone says you should do to be healthy.
Once again, my only conclusion is that we live in a broken world. Christ did not promise easy, but He promised that He would not abandon us.
Today I am blessed to have many people lifting me up in prayer and sending positive words of encouragement. There is a Bible verse in Ecclesiastes about the strength that comes from having one another’s support. I am deeply grateful for the strength that God has sent me through the words of encouragement from my friends and even people I do not know. My spirit is starting to lift.
“Two are better than one, because they have a good reward for their toil. For if they fall, one will lift up his fellow. But woe to him who is alone when he falls and has not another to lift him up!”