Summer is Over
After struggling with the first five years or so of my illness so I could finally acquire an accurate diagnosis of my debilitating health problems (now that was a brutal five years), I knew I needed a break from medical appointments. Five solid years of medical appointments every few days... involving quite a few painful, invasive tests... is enough. I quickly came up with a new rule... absolutely no medical appointments through the summer... June through September. I need a break... I need to enjoy life... I need to focus on me, not my health.
For the most part, I've been successful with this rule over the past ten years. Sometimes, however, a rule must be broken. This is one such summer when this rule needed to be broken. As a result, my summer is now over and it is back to business, as usual. My business since procuring this insidious illness is managing medical exams, medical testing and medical care.
We've been to the ophthalmologist five or six times in the past week and a half for an infection in Sheila's left eye. We still have at least another week and a half of appointments with that problem. Accompanying Sheila, however, is nothing like being the patient. Accompanying Sheila wears me down a little bit and cuts into what I might be able to accomplish in a day, but it is nothing like being the patient. Being the patient is the real problem and the reason for my summertime rule.
When I am the patient, I get worn down for days after each appointment. I have very little energy to use each day even on a good day but medical appointments wear me down enough that nothing else gets done for at least a couple of days for each appointment. Medical appointments seem to instantly sap me of energy.
This past weekend, I was sitting at my desk and felt a dry patch on the left side of my neck. At first, I thought it was just dried soap or dried shaving cream... I rubbed it... "no... it won't come off".
I headed to the bathroom where I could look in the mirror under some light... I needed two mirrors, but all I saw was a tiny dry patch. "No big deal..." and I headed back to my desk.
Sunday night, I was again sitting at my desk (as I am now) and I felt that dry patch again. "Hmmm... I really should check this out again... it feels really weird..." I get up and head for the bathroom mirrors again. This time, however, the dry patch is reddish and has grown to a little bit smaller than the size of a pencil eraser.
"That's odd..." It's still not much to worry about but I take a mental note because "I really need to remember to check this out again soon."
While I am looking at this little reddish dry patch, I begin to wonder, "I wonder if this is just a single mastocytoma?" This sounds worse than it actually is. A mastocytoma is related to my incurable illness, Systemic Mastocytosis. A mastocytoma, quite simply, it just a clumping of mast cells causing a reddened area. This thing didn't have all the characteristics nor all the symptoms (yet) of a mastocytoma, but common sense was telling me there are far worse things that this could be so I should hope it actually is a solitary mastocytoma.
If it is a clumping of mast cells, I need to apply some cream I have stored away just for such occasions. I applied some of this cream, put the little hand mirror away and headed back to my desk.
Monday morning, I apply some more of the cream.
Monday night arrives... again, at my desk and I feel that dry patch... "Oh yeah..." I immediately get up and head to the mirror in the bathroom... "Wow! What the he**!"
That little dry patch is now about a half inch across... reddish... a bit scabby... and quite nasty looking. Okay, now this thing has my undivided attention. "Wow... that thing grew quickly in just a few short days!"
We head to Sheila's appointment with the ophthalmologist the next day... her eye isn't doing too well at this point so I put off calling my own doctor. I figured I can squeeze in an appointment between Sheila's appointments (which have been every other day). In the meantime, I'll just continue using the cream and see if it might have some positive affect on clearing this thing up... one could hope, anyway. By now, however, I am admitting this is probably some type of cancer again.
When I call my primary care doctor, I find out that she is on vacation so I make an appointment with Sheila's primary care doctor (same office).
The doctor agrees that it doesn't look pretty...certainly not terrible... probably cancer but would need a biopsy to identify which type... but says there is nothing to worry about right now. She scheduled me for a biopsy when she returns from her own vacation but needs to schedule a separate appointment for that because this biopsy will take more time and it'll be a bit bloody (this growth is in a very soft and vulnerable area of the neck). In the meantime, she is also scheduling me with a specialist as well.
I've been down this road a few times before so dealing with different types of skin cancer is nothing new... hey, after all, it's the business I am in now... but, I have to say, I've never seen anything grow this quickly! I'm not too fond of the area of the neck where this thing is located either... too much blood rushing through there as well as too many lymph nodes.
The specialist I'm waiting to see is someone who has schwacked off quite a few cancerous growths from me in the past. I also have another specialist who does the more involved cancer surgeries for me. The last time his cancer removal required 28 stitches to close me up. What I'm seeing growing on my neck now, however, is growing much, much more quickly... and that is nagging at me a little bit.
What this means is that I cannot put this medical problem on hold just because I have a personal rule of no medical appointments in the summer months. (Incidentally, there is a practical reason for this rule too... doctors are coming and going throughout the summer because of their own vacations... it is easiest for everyone involved to just avoid medical care during these months.) Unfortunately, this problem needs attention now... appointments must be scheduled for as soon as possible.
So... I'm back to the business of managing and enduring ongoing medical care. This will steal precious energy from me... it will initiate a new schedule which revolves around medical appointments. I can tell you from years of experience that much of the rest of my schedule will revolve around sleep as a recover from appointments, tests, exams, procedures, travel, and far too much time waiting and wondering.
"Summertime" is in the rearview mirror... come on Christmas! (maybe I'll try to schedule a short break in care then...)
For the most part, I've been successful with this rule over the past ten years. Sometimes, however, a rule must be broken. This is one such summer when this rule needed to be broken. As a result, my summer is now over and it is back to business, as usual. My business since procuring this insidious illness is managing medical exams, medical testing and medical care.
We've been to the ophthalmologist five or six times in the past week and a half for an infection in Sheila's left eye. We still have at least another week and a half of appointments with that problem. Accompanying Sheila, however, is nothing like being the patient. Accompanying Sheila wears me down a little bit and cuts into what I might be able to accomplish in a day, but it is nothing like being the patient. Being the patient is the real problem and the reason for my summertime rule.
When I am the patient, I get worn down for days after each appointment. I have very little energy to use each day even on a good day but medical appointments wear me down enough that nothing else gets done for at least a couple of days for each appointment. Medical appointments seem to instantly sap me of energy.
This past weekend, I was sitting at my desk and felt a dry patch on the left side of my neck. At first, I thought it was just dried soap or dried shaving cream... I rubbed it... "no... it won't come off".
I headed to the bathroom where I could look in the mirror under some light... I needed two mirrors, but all I saw was a tiny dry patch. "No big deal..." and I headed back to my desk.
Sunday night, I was again sitting at my desk (as I am now) and I felt that dry patch again. "Hmmm... I really should check this out again... it feels really weird..." I get up and head for the bathroom mirrors again. This time, however, the dry patch is reddish and has grown to a little bit smaller than the size of a pencil eraser.
"That's odd..." It's still not much to worry about but I take a mental note because "I really need to remember to check this out again soon."
While I am looking at this little reddish dry patch, I begin to wonder, "I wonder if this is just a single mastocytoma?" This sounds worse than it actually is. A mastocytoma is related to my incurable illness, Systemic Mastocytosis. A mastocytoma, quite simply, it just a clumping of mast cells causing a reddened area. This thing didn't have all the characteristics nor all the symptoms (yet) of a mastocytoma, but common sense was telling me there are far worse things that this could be so I should hope it actually is a solitary mastocytoma.
If it is a clumping of mast cells, I need to apply some cream I have stored away just for such occasions. I applied some of this cream, put the little hand mirror away and headed back to my desk.
Monday morning, I apply some more of the cream.
Monday night arrives... again, at my desk and I feel that dry patch... "Oh yeah..." I immediately get up and head to the mirror in the bathroom... "Wow! What the he**!"
That little dry patch is now about a half inch across... reddish... a bit scabby... and quite nasty looking. Okay, now this thing has my undivided attention. "Wow... that thing grew quickly in just a few short days!"
We head to Sheila's appointment with the ophthalmologist the next day... her eye isn't doing too well at this point so I put off calling my own doctor. I figured I can squeeze in an appointment between Sheila's appointments (which have been every other day). In the meantime, I'll just continue using the cream and see if it might have some positive affect on clearing this thing up... one could hope, anyway. By now, however, I am admitting this is probably some type of cancer again.
When I call my primary care doctor, I find out that she is on vacation so I make an appointment with Sheila's primary care doctor (same office).
The doctor agrees that it doesn't look pretty...certainly not terrible... probably cancer but would need a biopsy to identify which type... but says there is nothing to worry about right now. She scheduled me for a biopsy when she returns from her own vacation but needs to schedule a separate appointment for that because this biopsy will take more time and it'll be a bit bloody (this growth is in a very soft and vulnerable area of the neck). In the meantime, she is also scheduling me with a specialist as well.
I've been down this road a few times before so dealing with different types of skin cancer is nothing new... hey, after all, it's the business I am in now... but, I have to say, I've never seen anything grow this quickly! I'm not too fond of the area of the neck where this thing is located either... too much blood rushing through there as well as too many lymph nodes.
The specialist I'm waiting to see is someone who has schwacked off quite a few cancerous growths from me in the past. I also have another specialist who does the more involved cancer surgeries for me. The last time his cancer removal required 28 stitches to close me up. What I'm seeing growing on my neck now, however, is growing much, much more quickly... and that is nagging at me a little bit.
What this means is that I cannot put this medical problem on hold just because I have a personal rule of no medical appointments in the summer months. (Incidentally, there is a practical reason for this rule too... doctors are coming and going throughout the summer because of their own vacations... it is easiest for everyone involved to just avoid medical care during these months.) Unfortunately, this problem needs attention now... appointments must be scheduled for as soon as possible.
So... I'm back to the business of managing and enduring ongoing medical care. This will steal precious energy from me... it will initiate a new schedule which revolves around medical appointments. I can tell you from years of experience that much of the rest of my schedule will revolve around sleep as a recover from appointments, tests, exams, procedures, travel, and far too much time waiting and wondering.
"Summertime" is in the rearview mirror... come on Christmas! (maybe I'll try to schedule a short break in care then...)
Comments
Post a Comment