One day last week I searched the internet for information on having continual pain months after a lung lobectomy. To my surprise I found a good support site and signed up to read some of the information. Once you sign up, it is like many other sites that uses a profile page for you. This site also includes a “Journal” for the members. The journal is actually a blog where readers can leave their comments. I haven’t posted a lot, only two times. My second post was how I decided to continue with the Chemotherapy that I am still on. The replies were top drawer and in each reply the reader noted that my writing was creative and expressive that conveyed some of their own thoughts. The following is a post that I wrote yesterday that I want to share with you.
A few years ago my bedtime changed to an early hour which then makes me rise before the break of dawn. This all happened because I was trying to lose many pounds and I decided one way to do this effectively was to retire to the bedroom early and once there I do not allow myself to make any runs to the refrigerator. Since my surgery and continuing on through my chemo treatment, I am often tired and still retire early.
One early morning, a few months ago, I walked from the bedroom and patted my thigh to let “Blackie” the cat know that I will let her out for an early romp with her feline friends. The house is dark, it is dark outside and downstairs I am all alone. I make coffee and listen for the last gurgles that tell me the pot has finished its duties. While I wait I make a piece of toast, very crunchy and very dark. Once the coffee is in the cup I sit on the sofa in my office. The darkness wraps around me like a friendly, relaxing arm and I use the time to think or meditate about me and the family I have.
I think of why I chose to join the study group for Chemo Therapy. After the first treatment I became very ill and needed to spend a few days in the hospital. One night after I came home I sat on the sofa in the darkness of the early morning. It came to me that I erred when I said I didn’t want to continue with the Chemo. I felt I needed to take the treatment for M and my sister, both who would not take it well if anything else happened to me early on. It was clear to me that I needed to continue the therapy because if I didn’t and the cancer started up again the guilt for not continuing had a good chance of instilling anger in me and my death, would be bitter. To continue therapy allows me to know that I have done everything I can to make sure a good chance of survival, but if the cancer begins again the knowledge that I did all I allows me to be calm during my last experience.
Without the early darkness of morning that allows my thoughts to form I never could have understood the chemotherapy is for me–that without it I may react badly to what the future holds.
When I had a high fever in March and made up my mind to go to the emergency room, I had no idea how that decision would change my world so drastically. As I write this post I realize how much everything has been reordered. The first two months after my surgery and subsequent healing went well. I assumed that life would return to me and the things I did before surgery would return.
Unfortunately, in May when I began ChemoTherapy, once again I had no idea how it would negatively affect me and what that meant for me. Now in September I can easily see that Chemo put an unwanted grip on me, forcing me to bed many days, still affecting me after its completion and realizing that the Avastin I am continuing to take brings with it some of the side affects that already have been with me.
The result of all of this is that I have not been able to do much at all during these many months. Sitting, or being in bed for days because of the side effects have left me worn, fatter than fat and skeptical of when I can ever be free of the drug side effects so I can start being me again. I worry also that once they go will the numbness and pain that remains at the surgical area ever go away and each day I feel my breathing will never be the same as it was. Huffing and puffing at times is standard now, although, it is better than having difficulty breathing for a full day. Thankfully that doesn’t happen that often.
So I think all of this has made me feel that I am now part of a club, one that doesn’t ask permission to enlist you and one that carries a nasty stigma that many people don’t understand. Regardless, if I am a survivor I will still be part of this same club, the C Club, the one that enlists you the day your cancer begins. It is not a pleasant reality. I bristle at the thought of being part of something that puts me in a group. I now live in a place and way that today and tomorrow is a question, particularly when I ask myself, “Has this all been worth it!”
Each morning after I awaken and stretch once or twice, I am ready to touch my feet to the floor and see what the first moment of the new day brings me. Lately, I hobble to the bathroom, then return to the bed and get back in, or being stupid, I pack up my computer and decide to go downstairs. The stairwell is always dark and I need to make sure I feel for the edge of the first step and the handrail. Once downstairs, I think I should not have come down so I head to my office to take a rest, usually I sit on the sofa and fall asleep.
When I wake this second time, the ability to feel better should available. Not always is the case and when it is a sluggish day it will stay that way all day.
Not long ago, I arose early and while having coffee planned my day. Most days I chose to work in my garden and I started around 6:00 a.m. It’s a great time to do what you like to do, pulling the weeds, raking and trimming and bring a particular part back into its original beauty. While I worked I talked to the plants making sure they were happy or telling them that they had a choice to survive or go!
Now those times are a thing of the past, hopefully, one day they will return. The loss of doing as I wish isn’t pleasant. For now I am subject to how I respond to Chemo and after having my second round of treatment yesterday I wonder how I will react this time or will it be an easier time than the first round of Chemo. Today, I trudged downstairs to get a few things done that were not difficult to do, yet by the time I finished I wanted to return upstairs. I was daunted by the stairway as I stood at the bottom looking up. Suddenly the top was farther away than it is. I took a deep breath, grabbed the railing and headed up the great expanse of steps!
Well, I am the one that caused my plight and I should not complain, but this state of life is one that I do not care for, so I must wait and see what happens. TIS not the best quality of life. I wonder, will that all change one day in one tomorrow?
It all begins now, as I sit in this large, reclining chair with my legs up, enjoying the chair’s massage unit and munching on little goldfish crackers, I could write about some posh spa I am in, yet the truth is I am at the Cancer Institute receiving my first round of chemotherapy. Outside, the clouds are rolling in and soon another heavy Florida rain will begin. Inside in the therapy room I am in a quiet corner without another patient near, although, there are many patients in the room, although the size of the room the activity seems diminished.
I arrived at 8:30 a.m. Now it is noon. The morning passed as I received drugs for nausea and other side affects. During the course of the day I will get ample saline with sodium chloride to keep me hydrated. By the time I leave am sure I will visit the bathroom many times!
The first drug finishes in ninety minutes and then two more are given one at a time.
The Cancer Institute is in a new building with good architecture outside and has a non-typical interior design in its choice of wall finishes, flooring, furniture and a handsome, curved, marble stairway with glass and chrome railings.
As only M can remark, he said that the Institute is so nice because of its large endowments. The majority of funds come from generous philanthropist and in return for their generosity individual cancer units are given their names in recognition. The names at this Cancer Institute are unknown to me since I assume they are Floridians. I plan to research who they are and become familiar with them.
Yea, it all began today. My regular chemotherapy will be over in twelve weeks. The third drug continues on and on for a year. Then for this experience it will be over and time will be the judge!