This post is completely my opinion. I expect many will disagree. And I welcome that.
I have always been the patient, albeit a sporadic one before, that had no problem with student doctors, residents, nurses, etc coming in during my appointments. I was this type of patient long, long before I realized I was destined to be a teacher, so this is nothing new. I don't mind that there is someone there to learn from me. What mattered to me was that my doctor was knowledgeable, skilled, and respected enough to be trusted with teaching someone how to do an incredibly important job. It not only reaffirmed my choice of doctors but reminded me why I saw them in the first place. I never minded they questions the "student" asked. I figure they are much more cautious and less inclined to write stuff off. I also figured their questions made my doctor justify their decisions and potentially second guess them to see if there was a better route for me, the patient. Now that I feel like a professional patient, I was beyond thrilled when my melanoma specialist brought in a resident/doctor-in-specialty-training in with her. I hate the fact that we need melanoma specialist but I loved knowing my doctor is training them while treating me.
Now, about those clinical trials that have gotten beat up in the press lately. On a conceptual basis, I am all in favor of them. Of course, there is no place for cutting corners, fudging statistics/data, or rushing things through. I believe that these are the exceptions to the amazing work that doctors do daily. So, it should come as no surprise that within a month of my initial diagnosis I was looking for clinical trials to be a part of. In any US state and for any type of research. I found a few that were very specific and did not need my Stage 1a self. I found a few others that had passed the point of accepting new patients. I kept trying and I think I might have found one. I can't say for sure I'll be accepted, it'll work out, or I can do it, but I sure am trying right now. The latest battle is my insurance company, again, to be a part of this. To me, it's a battle worth fighting. I look at it from the perspective that if I can keep another person from going through this or help their treatment if they do, then it's worth it to me. And another set of eyes being vigilant about my care is the frosting on this cake.
I wrote this post to express my thoughts and to hopefully make someone else consider letting that new doctor or nurse in the room. I believe you will make a difference, down the road, in another melanoma patients care. Same goes with clinical trials. My opinion is my own, but hopefully I've given you something to think about when forming your own, melanoma warrior or not.
Wednesday, September 21, 2011
Sunday, September 18, 2011
General Update
It's harder to post now that I'm back to teaching. Again, I'm reminded how lucky I am that the worst of my battle took place over the summer. I can't imagine making weekly or twice weekly appointments right now.
My scars are healing. I hit a patch last week where all of them were a little more sore. I think that's just the natural progression of healing. They are much more purple tinted now, so they are more noticeable. Again, it's a step in the right direction even though they look worse.
I'm settling in to my new normal some as well. I still spend way too much time in front of a mirror looking at my skin wondering if "this spot is going to kill me?" It's not a fun way to live and my stretches of morbid thoughts are getting a little further apart. I know that's part of the mental healing that goes with the disease but it still stinks to wonder if you're own skin will kill you.
My next appointment is 2 months away and right now, I'm not feeling the need to see her sooner. I keep reminding myself that she felt the highest risk spots are gone and that 3 months won't be life risking. I'm noticing that days are the easiest times to reassure myself and the worst is those final minutes as I fall asleep. My nights are getting more restful but the dreams are still turbulent and troubling. I'm up during the night less and that reminds me I'm mentally healing even though I might not see it.
My scars are healing. I hit a patch last week where all of them were a little more sore. I think that's just the natural progression of healing. They are much more purple tinted now, so they are more noticeable. Again, it's a step in the right direction even though they look worse.
I'm settling in to my new normal some as well. I still spend way too much time in front of a mirror looking at my skin wondering if "this spot is going to kill me?" It's not a fun way to live and my stretches of morbid thoughts are getting a little further apart. I know that's part of the mental healing that goes with the disease but it still stinks to wonder if you're own skin will kill you.
My next appointment is 2 months away and right now, I'm not feeling the need to see her sooner. I keep reminding myself that she felt the highest risk spots are gone and that 3 months won't be life risking. I'm noticing that days are the easiest times to reassure myself and the worst is those final minutes as I fall asleep. My nights are getting more restful but the dreams are still turbulent and troubling. I'm up during the night less and that reminds me I'm mentally healing even though I might not see it.
Sunday, September 11, 2011
10 years ago..
My very first day of teaching was 9-11-01. Exactly 10 years ago today. It's a day I learned about how strong my country is, how to teach when you didn't have the answers, and what amazing spirits children can be.
I was in law enforcement for almost 20 years. 9-11 hit home very hard because I know I would have run into the twin towers along with all the men and women I've ever worked with. The price public safety paid that day is still immeasurable. Even today those men and women are paying. Many of them are suffering multiple types of cancers and respiratory diseases that will eventually kill them. They may not have died on 9-11 but in the days following, their dedication will eventually cost them their lives.
I was a huge cancer research supporter long before 9-11. I watched it decimate my family. After 9-11, I've watched this disease infect many firefighters and cops with its black tendrils of death. And now I am fighting a cancer that may have been caused by my job. I will never know if a certain house fire I rushed into was "the one" that caused it. Or was it the car fire a different day? Or was it being in the sun for hours and hours on end directing traffic to keep my community safe because the lights were out? I bring this up because I am fighting to get my previous employer to cover some of my medicals costs. Many 9-11 responders are still fighting to be treated and cared for. And that's not ok with me or many others.
There is no way to prove that many of the cancers that NYPD and FDNY have contracted are related to 9-11, but we know deep down that that act of terrorism did not end that day. My heart goes out to the families who lost their spouses, brothers, sisters, cousins, friends and any one else that day. My heart doubly breaks thinking of those still fighting the effects of 9-11 today. Ten years later.
I was in law enforcement for almost 20 years. 9-11 hit home very hard because I know I would have run into the twin towers along with all the men and women I've ever worked with. The price public safety paid that day is still immeasurable. Even today those men and women are paying. Many of them are suffering multiple types of cancers and respiratory diseases that will eventually kill them. They may not have died on 9-11 but in the days following, their dedication will eventually cost them their lives.
I was a huge cancer research supporter long before 9-11. I watched it decimate my family. After 9-11, I've watched this disease infect many firefighters and cops with its black tendrils of death. And now I am fighting a cancer that may have been caused by my job. I will never know if a certain house fire I rushed into was "the one" that caused it. Or was it the car fire a different day? Or was it being in the sun for hours and hours on end directing traffic to keep my community safe because the lights were out? I bring this up because I am fighting to get my previous employer to cover some of my medicals costs. Many 9-11 responders are still fighting to be treated and cared for. And that's not ok with me or many others.
There is no way to prove that many of the cancers that NYPD and FDNY have contracted are related to 9-11, but we know deep down that that act of terrorism did not end that day. My heart goes out to the families who lost their spouses, brothers, sisters, cousins, friends and any one else that day. My heart doubly breaks thinking of those still fighting the effects of 9-11 today. Ten years later.
Wednesday, September 7, 2011
Telling your co-worker
The day finally came today. Someone at my school, in the staff room, asked how my summer was. The moment of truth. If you know me in person, I'm terrible at telling a lie. Awful. So there it was......the question I had been hoping to avoid for a few more months. Long enough for them to get to know me first and not my disease. Oh well, I didn't make it.
I tried to keep it simple. As simple as you can....... but how do you keep weekly doctor's visits, deadly diseases, and out patients surgeries simple. I don't know. I haven't figured it out yet. When I uttered the word "melanoma" the discomfort was palatable. And I felt like garbage for being honest. From then on, I tried to minimize how rough the summer was. I don't think I did a very good job. Let's just say I tried to steer the conversation quickly in another direction.
I'm worried about how my fellow co-workers will treat me tomorrow. Honestly, I don't care about how they judge me. I didn't before and I surely don't know. Cancer will do that to you. What I do care about is them being uncomfortable around me. I'm still me. The goofy, trying to figure out 6th grade, new teacher they knew yesterday. Unfortunately, they now might see me as battling a potentially devastating disease. I've become my diagnosis again. And that's what it boils down to for me. For a few blessed weeks, no one knew. I was me, without melanoma hanging a black cloud over my head. And I'm not that now. I don't like it. I liked being the me that might have been before that fateful call in June. And I can't be any longer. The ruse is up.
I know this makes me seem shallow and vain. It's because I am shallow and vain sometimes. I wanted to be judged on the merit of my work with making low income students successful, strong learners. I don't want to be the teacher who has skin cancer. I'm not that woman, I am so much more. I know I have time in the coming months to show exactly who I am. I also know that that time will forever now be tinged with the shade of melanoma. And I don't like it. Not at all. I'm strong enough to admit that now. I'm strong enough to admit being shallow and vain. It's ironic. The disease that gives me the strength to admit my weaknesses is the one I don't want to be judged for.
The information about me will spread through the ranks of my co-workers in the coming days. I'm not looking forward to the sympathy and dealing with it. (See my previous post about my inability to deal with it). I really need to come up with a polite, positive response to well meaning co-workers who find out about my diagnosis. Right now, I've got nothing but painful, uncomfortable honesty. My mom always did say "honesty is the best policy," so I think I'll start there. It's something more than I know what to say now.
I tried to keep it simple. As simple as you can....... but how do you keep weekly doctor's visits, deadly diseases, and out patients surgeries simple. I don't know. I haven't figured it out yet. When I uttered the word "melanoma" the discomfort was palatable. And I felt like garbage for being honest. From then on, I tried to minimize how rough the summer was. I don't think I did a very good job. Let's just say I tried to steer the conversation quickly in another direction.
I'm worried about how my fellow co-workers will treat me tomorrow. Honestly, I don't care about how they judge me. I didn't before and I surely don't know. Cancer will do that to you. What I do care about is them being uncomfortable around me. I'm still me. The goofy, trying to figure out 6th grade, new teacher they knew yesterday. Unfortunately, they now might see me as battling a potentially devastating disease. I've become my diagnosis again. And that's what it boils down to for me. For a few blessed weeks, no one knew. I was me, without melanoma hanging a black cloud over my head. And I'm not that now. I don't like it. I liked being the me that might have been before that fateful call in June. And I can't be any longer. The ruse is up.
I know this makes me seem shallow and vain. It's because I am shallow and vain sometimes. I wanted to be judged on the merit of my work with making low income students successful, strong learners. I don't want to be the teacher who has skin cancer. I'm not that woman, I am so much more. I know I have time in the coming months to show exactly who I am. I also know that that time will forever now be tinged with the shade of melanoma. And I don't like it. Not at all. I'm strong enough to admit that now. I'm strong enough to admit being shallow and vain. It's ironic. The disease that gives me the strength to admit my weaknesses is the one I don't want to be judged for.
The information about me will spread through the ranks of my co-workers in the coming days. I'm not looking forward to the sympathy and dealing with it. (See my previous post about my inability to deal with it). I really need to come up with a polite, positive response to well meaning co-workers who find out about my diagnosis. Right now, I've got nothing but painful, uncomfortable honesty. My mom always did say "honesty is the best policy," so I think I'll start there. It's something more than I know what to say now.
Monday, September 5, 2011
Joy in unexpected ways
This weekend is the "official" last hurrah of summer. To our family, it felt like it ended three weeks ago when sschool started. On the other hand, this was our last chance to spend an extended summer weekend up in the mountains at my father-in-law's cabin.
I had lots and lots plans for projects to complete this summer at the cabin. My FIL is getting up there in age and the basic and not-so-basic maintenance has fallen by the wayside in the last few years. That combined with the boys getting older and us visiting there more often meant we needed to catch up. This was my original plan this summer. I was going to replace and fix long ago busted water lines, clean and seal a huge deck, install a new toilet/shower combo, and so on. Of course, none of this happened after that phone call in June and the subsequent procedures.
I spent the last two months visiting the cabin to heal my body physically and mentally. I really felt like I was operating with one arm on all those visits. It might have been my left, non-dominant arm but it still severely restricted my ability to do construction, projects and general heavy maintenance. This visit was wonderfully, gratefully different.
I got the last two sets of stitches out last week. Those wounds are healing far faster than the open wounds nearby that are almost 6 weeks older. My range of motion in my left arm is about 95% from the original site and I hardly suffer any discomfort from it any more. So, the projects were on.
Unfortunately, this weekend was only three days. So, we prioritized about what needed to get done before winter hits sometime in October, November, or December. (Yeah, it's that unpredictable in the Sierra Mountain Range). My FIL picked cleaning and sealing the large redwood deck. I simply did not care. DID NOT CARE. I just wanted to work. Really work. With no restrictions or conditions on my body. And I did. It felt so good. At least mentally. The physically sore part is NOT my back or left arm and I couldn't be happier about that. My legs and back are letting me know I used muscles long over rested. But I've never been so grateful to push my body physically and get a large project done. I had taken that ability for granted. I was so incredibly happy to be pressure washing, sealing, sweeping, cleaning, etc, etc, this weekend.
I almost felt normal. Almost. Maybe my new normal isn't far away.
I had lots and lots plans for projects to complete this summer at the cabin. My FIL is getting up there in age and the basic and not-so-basic maintenance has fallen by the wayside in the last few years. That combined with the boys getting older and us visiting there more often meant we needed to catch up. This was my original plan this summer. I was going to replace and fix long ago busted water lines, clean and seal a huge deck, install a new toilet/shower combo, and so on. Of course, none of this happened after that phone call in June and the subsequent procedures.
I spent the last two months visiting the cabin to heal my body physically and mentally. I really felt like I was operating with one arm on all those visits. It might have been my left, non-dominant arm but it still severely restricted my ability to do construction, projects and general heavy maintenance. This visit was wonderfully, gratefully different.
I got the last two sets of stitches out last week. Those wounds are healing far faster than the open wounds nearby that are almost 6 weeks older. My range of motion in my left arm is about 95% from the original site and I hardly suffer any discomfort from it any more. So, the projects were on.
Unfortunately, this weekend was only three days. So, we prioritized about what needed to get done before winter hits sometime in October, November, or December. (Yeah, it's that unpredictable in the Sierra Mountain Range). My FIL picked cleaning and sealing the large redwood deck. I simply did not care. DID NOT CARE. I just wanted to work. Really work. With no restrictions or conditions on my body. And I did. It felt so good. At least mentally. The physically sore part is NOT my back or left arm and I couldn't be happier about that. My legs and back are letting me know I used muscles long over rested. But I've never been so grateful to push my body physically and get a large project done. I had taken that ability for granted. I was so incredibly happy to be pressure washing, sealing, sweeping, cleaning, etc, etc, this weekend.
I almost felt normal. Almost. Maybe my new normal isn't far away.
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