I wrote a new blog entry which appeared in my cancer center's Cancerwise blog today. The blog entry is on simple tools I use to help manage my ongoing care. Following is a link to the post.
http://www2.mdanderson.org/cancerwise/2012/02/tools-to-manage-ongoing-care.html
Enjoy,
Ed
Tuesday, February 7, 2012
Sunday, February 5, 2012
To Walk in My Shoes
I have blogged in the past about my “new normal.” The “new normal” is the state in which I find myself (physically and mentally) as a result of my cancer and the life sustaining medical treatments of radiation, chemotherapy, and surgery. My “new normal” characteristics include a lack of stamina, a compromised immune system, speech difficulties, swallowing issues, lack of saliva, minor facial paralysis, extremity neuropathy (mostly in the balls/toes of my feet), maintaining a comfortable body temperature, manageable chronic pain, occasional TMJ, and lastly (self-diagnosed) a form of PTSD.
What’s not on this list is the external facial scaring from multiple facial surgeries. What makes this important is 1) my surgeons did an amazing job of facial reconstruction and 2) whatever scars I do have just don’t bother me.
The following is in no way a complaint; it is an explanation of how these changes impact me on a day-to-day basis and I’ll do it by way of two examples. The world that makes up my “new normal” is all internal, there are no obvious visible scars, lost limbs, obvious paralysis, etc. that would alert outsiders (i.e., that’s everyone outside my body) to see that my world may be different than theirs. This point is important! I look normal to everyone and the halo effect takes over until I do something that may seem anti-social or unusual.
Example 1: Oral hygiene. Without rehashing old news, I have trouble keeping my oral cavity clean. While the majority of what I drink ends up in my stomach (where it should), some of it remains in my oral cavity, upper esophagus, and at times in my wind pipe. I can’t wash it down, brush it out, gargle or find any other effective means of keeping my oral cavity clean. I have to spend time after each meal meticulously washing my oral cavity. What this means is that I like to eat (and I use that term loosely) twice a day so that I’m not spending more time than necessary taking care of my oral hygienic needs. A few years ago I bought a used Gomco aspiration suction device off of eBay for $100. To give you a feel for its age, it had a tag that said “Inspected 1977.” It weighs about 30 pounds, is something that you may have seen in your dentist’s office in the 1970s and 80s and is pretty effective at helping me clean my oral cavity. Unfortunately, it’s not all that portable. I traveled from Texas to Virginia earlier this week. My mouth felt very uncomfortable because I couldn’t properly clean it. My wife and I headed to CVS to see if there was a solution to this problem. She found a small electric baby nasal suction device ($31) from Graco. I knew it wouldn’t work as is, but I thought a trip to Home Depot would yield good results. I bought some small plastic tubing and a gasket ($5) and now have a device that does what I need it to. Below is a picture of the device. In addition to all the above, I see my dental hygienist every three months to help keep my oral hygiene in check. Keeping my oral cavity clean after all my treatments is mandatory to my continued good health.
Example 2: Standing and talking. Who out there can not stand and talk? I don’t see many hands. I can stand and talk, but it causes my obturator (a device I wear inside my mouth that helps me with speech) to put a strain on my back teeth which in turn can lead to TMJ and severe pain. It is much more comfortable for me to talk while sitting and, in addition, to not just sit, but to sit in a slightly reclined position. This has an impact on me in social situations. Remember, I look normal. I know standing and talking is a great way to socialize, yet I also know this will lead to pain. I find it awkward to go into another room and sit by myself although this is the action I sometimes take. If I slouch when I sit it is not because I’m lazy, it is because it is more comfortable and in the end will mean less pain. It is these little nuances in my behavior that have an impact on my day-to-day living.
Each and every one of my other differences has their own impacts and nuances. This blog entry is not a complaint; it’s me trying to explain what to some may appear odd behavior, but to me it is a way to manage my differences in the best way I know how.
Take care,
Ed
What’s not on this list is the external facial scaring from multiple facial surgeries. What makes this important is 1) my surgeons did an amazing job of facial reconstruction and 2) whatever scars I do have just don’t bother me.
The following is in no way a complaint; it is an explanation of how these changes impact me on a day-to-day basis and I’ll do it by way of two examples. The world that makes up my “new normal” is all internal, there are no obvious visible scars, lost limbs, obvious paralysis, etc. that would alert outsiders (i.e., that’s everyone outside my body) to see that my world may be different than theirs. This point is important! I look normal to everyone and the halo effect takes over until I do something that may seem anti-social or unusual.
Example 1: Oral hygiene. Without rehashing old news, I have trouble keeping my oral cavity clean. While the majority of what I drink ends up in my stomach (where it should), some of it remains in my oral cavity, upper esophagus, and at times in my wind pipe. I can’t wash it down, brush it out, gargle or find any other effective means of keeping my oral cavity clean. I have to spend time after each meal meticulously washing my oral cavity. What this means is that I like to eat (and I use that term loosely) twice a day so that I’m not spending more time than necessary taking care of my oral hygienic needs. A few years ago I bought a used Gomco aspiration suction device off of eBay for $100. To give you a feel for its age, it had a tag that said “Inspected 1977.” It weighs about 30 pounds, is something that you may have seen in your dentist’s office in the 1970s and 80s and is pretty effective at helping me clean my oral cavity. Unfortunately, it’s not all that portable. I traveled from Texas to Virginia earlier this week. My mouth felt very uncomfortable because I couldn’t properly clean it. My wife and I headed to CVS to see if there was a solution to this problem. She found a small electric baby nasal suction device ($31) from Graco. I knew it wouldn’t work as is, but I thought a trip to Home Depot would yield good results. I bought some small plastic tubing and a gasket ($5) and now have a device that does what I need it to. Below is a picture of the device. In addition to all the above, I see my dental hygienist every three months to help keep my oral hygiene in check. Keeping my oral cavity clean after all my treatments is mandatory to my continued good health.
Each and every one of my other differences has their own impacts and nuances. This blog entry is not a complaint; it’s me trying to explain what to some may appear odd behavior, but to me it is a way to manage my differences in the best way I know how.
Take care,
Ed
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