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!”
Three days from now I will have an anniversary, a one month anniversary since I had a lower-left lung lobectomy. I am still unsure of what I think or feel about this change in my life. At times, when my left chest is quiet and not bothering me, it is life like it was and then, depending on a movement I quickly remember, although, when I remember I understand everything, yet it is as if I am under a veil of silk that protects me from reality. The veil guards me from viewers, by not allowing them to easily see the form within. It is as if I am the form and I am also the viewer of the form.
The form knows everything, has been through every step of life before this surgery, during it and now. The form prefers the memories be left as undefined as possible and so, it prefers placing a protective veil over itself so that outside chatter about the present change will not puncture its world. Part of the problem is that I accept what has happened, without questions that will define the future. I know that when I am up doing the things that I shouldn’t be doing and that make me exhausted and worn is all part of preferring the veiled existence.
I also am very sensitive that my inner family members are extremely concerned and so I promise to rest, lay down, play games on the computer, yet all I want to do is do what I did before and how I did it. The first couple of days in this week were busy. Some with shopping and appointments and lengths of time where I did as I wished, yet yesterday and today had big doses of penance. When exhaustion, nervousness and discomfort set in I know that to live under a silk veil is not the way to go.
Three more days and an anniversary certainly are not paramount events. What is most important is that I accept what has happened, take the time to heal properly and hope that every other anniversary will bring the close of another year that has gone well for me.