I’m still Alive.
I no longer have the scars of Frankenstein....my face has healed nicely.
I don’t take anxiety medications anymore.
I’ve worked through the PTSD form a combination of 40 years of full time nursing and Cancer diagnosis with a bit of mismanagement within the medical system.... but it’s all ok now.
Life is as good as it could be as I approaching 65.
Does anyone read blogs anymore?
Do they write them?
I think this will be the last entry....at least, until I can remember anything worth noting.
Thanks for your visit!
R(etired)N
As a formally retired RN.... I guess my Blog Title is fairly accurate
Sunday, June 2, 2019
Wednesday, April 22, 2015
Finally, an update!
Where was I?????
Oh yes, I promised to update! Sorry about that!
It's been so long since my last post, I had to re-read the last few to make sure I didn't repeat myself!
Since the last post I have had quite a few more trips to the Cancer Clinic psychologist (with not too much progress with my anxieties), the addition of another psychologist thanks to my insurance company that provides me with enough money to eat and pay the bills (in hopes that they can get me back to work), a removal of a suspicious looking mole that was changing (it was benign!) and a visit to my dermatologist at the Cancer Clinic 80 kilometers away who discovered (well, I pointed it out after the fact) which he then diagnosed as basal cell carcinoma. The other day my MD sliced it off and I drove it over to the hospital lab.
I will find out next week when I get my stitches out, what the official biopsy says.
Meanwhile, I am left wondering - will it ever end?
I think I know that answer.
No - it will NEVER end. Ever.
Even if nothing else crops up - I will always be hyper vigilant, looking for the next bump or changing mole. There is no escape from the worry.
Yes, I know there are people way worse off than me. I have seen and talked to those people - watched them suffer horribly and even die. I have talked to bereaved families. Prepared the now vacant bodies for the morgue after the relatives said their last tearful goodbyes.
I suppose therein lies my dilemma. Nurses know way too much. Have seen way too much.
We aren't supposed to be that person that gets sick... We are the caretakers. Everyone else gets sick - not us!
Funny thing when I ask other people I know who have been diagnosed with melanoma.
I ask: "what Breslow's thickness was your melanoma? Clark's level? What were you staged at?"
Most people have no idea. They don't even want to know! They aren't even interested. They reply, if they reply at all - "oh the doc just cut it out and that's the end of it..."
You see, as a nurse, I just don't understand that. Not at all.
I need to know everything. In scientific language and in great detail. I need to know statistics and numbers and treatments in progress and the latest research and studies and the latest drugs, even though I am not at that stage.
I also can't understand why healthy people won't take precautions in the sun and wear good sunscreen and cover up because statistically - more people get cancer from UV exposure than from smoking.
I am like a crazy person walking into tanning bed facilities and showing them my slashed face and my surgery photos and telling them what their business is doing to people.
I wish my counselling was helping, but, going by my behaviour- I don't think it is.
The impact of this diagnosis has been more traumatic than my MVA that caused me to be unable to work in a hospital ever again. I thought the PTS I experienced after was tough, but I am finding this to be insurmountable.
Two more months and I will have been off work for a whole year.
Since I started work in 1977 - I have never been off work longer than a month, maybe.
Honestly? I don't know if I will ever be able to go back.
More on that later.
I promise.
Oh yes, I promised to update! Sorry about that!
It's been so long since my last post, I had to re-read the last few to make sure I didn't repeat myself!
Since the last post I have had quite a few more trips to the Cancer Clinic psychologist (with not too much progress with my anxieties), the addition of another psychologist thanks to my insurance company that provides me with enough money to eat and pay the bills (in hopes that they can get me back to work), a removal of a suspicious looking mole that was changing (it was benign!) and a visit to my dermatologist at the Cancer Clinic 80 kilometers away who discovered (well, I pointed it out after the fact) which he then diagnosed as basal cell carcinoma. The other day my MD sliced it off and I drove it over to the hospital lab.
I will find out next week when I get my stitches out, what the official biopsy says.
Meanwhile, I am left wondering - will it ever end?
I think I know that answer.
No - it will NEVER end. Ever.
Even if nothing else crops up - I will always be hyper vigilant, looking for the next bump or changing mole. There is no escape from the worry.
Yes, I know there are people way worse off than me. I have seen and talked to those people - watched them suffer horribly and even die. I have talked to bereaved families. Prepared the now vacant bodies for the morgue after the relatives said their last tearful goodbyes.
I suppose therein lies my dilemma. Nurses know way too much. Have seen way too much.
We aren't supposed to be that person that gets sick... We are the caretakers. Everyone else gets sick - not us!
Funny thing when I ask other people I know who have been diagnosed with melanoma.
I ask: "what Breslow's thickness was your melanoma? Clark's level? What were you staged at?"
Most people have no idea. They don't even want to know! They aren't even interested. They reply, if they reply at all - "oh the doc just cut it out and that's the end of it..."
You see, as a nurse, I just don't understand that. Not at all.
I need to know everything. In scientific language and in great detail. I need to know statistics and numbers and treatments in progress and the latest research and studies and the latest drugs, even though I am not at that stage.
I also can't understand why healthy people won't take precautions in the sun and wear good sunscreen and cover up because statistically - more people get cancer from UV exposure than from smoking.
I am like a crazy person walking into tanning bed facilities and showing them my slashed face and my surgery photos and telling them what their business is doing to people.
I wish my counselling was helping, but, going by my behaviour- I don't think it is.
The impact of this diagnosis has been more traumatic than my MVA that caused me to be unable to work in a hospital ever again. I thought the PTS I experienced after was tough, but I am finding this to be insurmountable.
Two more months and I will have been off work for a whole year.
Since I started work in 1977 - I have never been off work longer than a month, maybe.
Honestly? I don't know if I will ever be able to go back.
More on that later.
I promise.
Sunday, December 28, 2014
it's A Waiting Game
I just realized I left you all hanging.
I finally got that urology consult.
It only took a week but you know how long a week takes when you are waiting for information. My 'nurse brain' was telling me that one week wasn't going to make any difference, but the patient in me was getting anxious about the wait - and the wait was heightening my anxiety.
The 'nurse brain' observed with interest the patient in me panicking.
My RN girlfriend obliged to accompany me the day of my Urology visit.... you know, the one that I worked with at the prison. I have mentioned her in past posts.
She knows every urologist between here and Vancouver due to a family member with renal problems - and also from working in PAR in the local hospital.
When the doc finally called us in to the office - it was like homecoming week. The first 10 minutes of the consult was the two of them catching up on their subsequent lives since last they worked together.
Then down to business.
Once he knew we were RNs, he felt free to talk "medicalese" while explaining what was going on with my kidney. For nurses, "medicalese" is more accurate when it comes to the nuances of what is going on, rather than the generalizations of what your average patient might get. He pulls up both the actual CT and ultrasound and goes into great detail about what we are looking at. I get up and go behind his desk to look over his shoulder and look a little more closely at the forms on the screen, feeling free to ask questions.
I verbalized my concern about the conflicting reports and asked why - if e CT is the "gold standard" - why would they be leaning more to relying on the results of the ultrasound?
Seems that the cyst - or whatever the 'thing' is appearing on my left kidney - is so small at 2 centimetres, it is difficult to accurately determine but "probability based on the ultrasound" says its a cyst.....but just in case, he is going to recommend a repeat ultrasound every 6 months for the next couple years with his follow-up visits just to keep an eye on it.
Apparently, stats show, even if it is carcinoma, renal cancer is slow growing and the chances of metastases at his size of tumour is about 1.1% and at the moment, so he says, it's more prudent to wait and see. He pulled out his charts and pointed out the red line where he would start to do something about it - at 3 centimetres.
I was content with that (albeit slightly uneasy) because my girlfriend had been to her own MD the day before ( his office was fortuitously shared with the said urologist), and he had replied to my girlfriend's inquiry about the MD Urologist neighbour, " You never heard it from me, but he tends to be a little 'knife-happy'".
A "knife happy" MD that says it's best to wait - well, there is some reassurance in that.
There is also some reassurance in the fact they will keep a close eye on me. Between my q6 month dermatology appointments and my q6 month urology visits....I think I am covered - for now.
I also give credit for my coping skills to my daily dose of cipralex that I have been on for a month now.
Meanwhile, it's daily inspections of my lymph nodes and the occasional ibuprofen for the kidney pain....although I try not to overdo it on the advice of my girlfriend Laurie who was manager of a Renal Unit in a hospital I used to work at.
And, I am still off work. Those pesky little panic attacks hit at the weirdest times but I am trying to control them with relaxation techniques and visualization - the advice I have often dispensed to my own patients - and I am starting to think that my own advice has been a lot of smoke and mirrors - because it's not working......
But, at least I am hopeful it eventually will.
So, as we left the urologist's office, I am sure the waiting patients must have wondered at our discussion debating about how lung cancer wasn't the best diagnoses and if one was to have renal cancer, well that's the one to choose......
I finally got that urology consult.
It only took a week but you know how long a week takes when you are waiting for information. My 'nurse brain' was telling me that one week wasn't going to make any difference, but the patient in me was getting anxious about the wait - and the wait was heightening my anxiety.
The 'nurse brain' observed with interest the patient in me panicking.
My RN girlfriend obliged to accompany me the day of my Urology visit.... you know, the one that I worked with at the prison. I have mentioned her in past posts.
She knows every urologist between here and Vancouver due to a family member with renal problems - and also from working in PAR in the local hospital.
When the doc finally called us in to the office - it was like homecoming week. The first 10 minutes of the consult was the two of them catching up on their subsequent lives since last they worked together.
Then down to business.
Once he knew we were RNs, he felt free to talk "medicalese" while explaining what was going on with my kidney. For nurses, "medicalese" is more accurate when it comes to the nuances of what is going on, rather than the generalizations of what your average patient might get. He pulls up both the actual CT and ultrasound and goes into great detail about what we are looking at. I get up and go behind his desk to look over his shoulder and look a little more closely at the forms on the screen, feeling free to ask questions.
I verbalized my concern about the conflicting reports and asked why - if e CT is the "gold standard" - why would they be leaning more to relying on the results of the ultrasound?
Seems that the cyst - or whatever the 'thing' is appearing on my left kidney - is so small at 2 centimetres, it is difficult to accurately determine but "probability based on the ultrasound" says its a cyst.....but just in case, he is going to recommend a repeat ultrasound every 6 months for the next couple years with his follow-up visits just to keep an eye on it.
Apparently, stats show, even if it is carcinoma, renal cancer is slow growing and the chances of metastases at his size of tumour is about 1.1% and at the moment, so he says, it's more prudent to wait and see. He pulled out his charts and pointed out the red line where he would start to do something about it - at 3 centimetres.
I was content with that (albeit slightly uneasy) because my girlfriend had been to her own MD the day before ( his office was fortuitously shared with the said urologist), and he had replied to my girlfriend's inquiry about the MD Urologist neighbour, " You never heard it from me, but he tends to be a little 'knife-happy'".
A "knife happy" MD that says it's best to wait - well, there is some reassurance in that.
There is also some reassurance in the fact they will keep a close eye on me. Between my q6 month dermatology appointments and my q6 month urology visits....I think I am covered - for now.
I also give credit for my coping skills to my daily dose of cipralex that I have been on for a month now.
Meanwhile, it's daily inspections of my lymph nodes and the occasional ibuprofen for the kidney pain....although I try not to overdo it on the advice of my girlfriend Laurie who was manager of a Renal Unit in a hospital I used to work at.
And, I am still off work. Those pesky little panic attacks hit at the weirdest times but I am trying to control them with relaxation techniques and visualization - the advice I have often dispensed to my own patients - and I am starting to think that my own advice has been a lot of smoke and mirrors - because it's not working......
But, at least I am hopeful it eventually will.
So, as we left the urologist's office, I am sure the waiting patients must have wondered at our discussion debating about how lung cancer wasn't the best diagnoses and if one was to have renal cancer, well that's the one to choose......
Tuesday, December 2, 2014
If it Doesn't rain - it pours!
I have been awaiting my contrast CT results with trepidation, especially since I have been having a lot of breathing issues lately.
I had pleurisy my first year of college and have scarring on my lungs as a result. The occupational nurse that would follow up on our yearly chest Xrays for TB (yes, they did that!!) would always run up to me each year all excited and concerned about what was showing up on the screening. So I was used to that.
Then in 2008 there was a scare when a CT of my shoulder inadvertently showed up "nodules" in my lung - which led to a full CT and the r/o of lesions (or cancer) of the lung.
I occasionally use puffers when I have had a cold or become congested by some unknown environmental irritant ( I think it's cleaning fluids and aerosols - DON'T think it's our cats! of course not! ) So, I must admit I was a little worried.
I was VERY worried when I got a cryptic 3:30 call from my MD office saying that my MD wants to see me the next am. My dear Cancer Buddy suggested I take an ativan and down it with a glass of wine....I was so freaked. (it worked) The last time the MD office wanted to see me "quick" was July 4th 2014...the day of my melanoma diagnosis.
I was relieved that the CT showed that my lungs are clear.
HOWEVER.
When I was in getting the CT - I told the gals in Radiology to scoop down a little farther with the CT because I have been having some minor to moderate intermittent Left Kidney pain. It wasn't strong enough to see an MD or go to emergency. It usually subsided with a whole lot of fluids and an ibuprofen. But I had had it for about a couple years and early this year there was moderate to trace of blood in my urinalysis - with no other UTI symptoms. My renal function tests were fine. I thought it was maybe kidney stones, because it ran in the family.
Lucky the gals in radiology complied....and interestingly enough they discovered a mass that measures 2cmX1.6cmX1.6cm that is "suspicious for a renal neoplasm." The upshot is the "Exophytic hypoattenuating mass at the upper pole left kidney is suspicious for a renal cell carcinoma" and I now have an urgent consult to a urologist. The dermatologist didn't think it's related to the melanoma.
Crap.
Back I go to the research and books and studies and treatments.......
I was just starting to feel a little better with the counseling and medication.
I had pleurisy my first year of college and have scarring on my lungs as a result. The occupational nurse that would follow up on our yearly chest Xrays for TB (yes, they did that!!) would always run up to me each year all excited and concerned about what was showing up on the screening. So I was used to that.
Then in 2008 there was a scare when a CT of my shoulder inadvertently showed up "nodules" in my lung - which led to a full CT and the r/o of lesions (or cancer) of the lung.
I occasionally use puffers when I have had a cold or become congested by some unknown environmental irritant ( I think it's cleaning fluids and aerosols - DON'T think it's our cats! of course not! ) So, I must admit I was a little worried.
I was VERY worried when I got a cryptic 3:30 call from my MD office saying that my MD wants to see me the next am. My dear Cancer Buddy suggested I take an ativan and down it with a glass of wine....I was so freaked. (it worked) The last time the MD office wanted to see me "quick" was July 4th 2014...the day of my melanoma diagnosis.
I was relieved that the CT showed that my lungs are clear.
HOWEVER.
![]() |
| They did a good job of the IV insert |
Lucky the gals in radiology complied....and interestingly enough they discovered a mass that measures 2cmX1.6cmX1.6cm that is "suspicious for a renal neoplasm." The upshot is the "Exophytic hypoattenuating mass at the upper pole left kidney is suspicious for a renal cell carcinoma" and I now have an urgent consult to a urologist. The dermatologist didn't think it's related to the melanoma.
Crap.
Back I go to the research and books and studies and treatments.......
I was just starting to feel a little better with the counseling and medication.
Thursday, November 13, 2014
Life is Just a Bottle of Wine
I am starting to sound morbid.
Really, I am not at death's door by any stretch of the imagination, but you might think that by reading my last few posts. I am not so depressed that I am sitting in a lump in a closet waiting for the world to cave in. Really.
And - I am certainly not suicidal. Quite the opposite!
When one is melancholic....one gets therapeutic and writes. That's been my modus operandi throughout my life.
It's no different now that I have had another monkey wrench thrown into the works. I write when I am feeling down or confused. I actually advise my own patients to do this....because it does help.
It also provides amusement when I am feeling better. You see, you can look back and realize things weren't so bad after all.
My doc phoned me up on Monday last and we had a 30 minute conversation about everything that had gone on this summer. Very good of him to do so. He did it because he wanted to connect - because he felt that it was difficult for me not to have ongoing contact with the MD that did the surgery.
I thought that was very commendable of him. It momentarily made me feel better.
I sent him a recent photo of what the scar looked like and he in turn sent me a photo of the scar as he saw it at my first post op visit. He reassured me about the pigmentation and thought it was a result of the surgery and also thought that some of it was already there.
I will still monitor it - and that is what he advises also.
He also advises monitoring my lymph for lumps, because that is the only way I am going to know if there is metastases.
Each year that passes, I will celebrate with a bottle of wine that I had made and specially labelled.
I believe I will get to polish off all of them!
Meanwhile, here are the photos my Doc and I exchanged:
Really, I am not at death's door by any stretch of the imagination, but you might think that by reading my last few posts. I am not so depressed that I am sitting in a lump in a closet waiting for the world to cave in. Really.
And - I am certainly not suicidal. Quite the opposite!
When one is melancholic....one gets therapeutic and writes. That's been my modus operandi throughout my life.
It's no different now that I have had another monkey wrench thrown into the works. I write when I am feeling down or confused. I actually advise my own patients to do this....because it does help.
It also provides amusement when I am feeling better. You see, you can look back and realize things weren't so bad after all.
My doc phoned me up on Monday last and we had a 30 minute conversation about everything that had gone on this summer. Very good of him to do so. He did it because he wanted to connect - because he felt that it was difficult for me not to have ongoing contact with the MD that did the surgery.
I thought that was very commendable of him. It momentarily made me feel better.
I sent him a recent photo of what the scar looked like and he in turn sent me a photo of the scar as he saw it at my first post op visit. He reassured me about the pigmentation and thought it was a result of the surgery and also thought that some of it was already there.
I will still monitor it - and that is what he advises also.
He also advises monitoring my lymph for lumps, because that is the only way I am going to know if there is metastases.
Each year that passes, I will celebrate with a bottle of wine that I had made and specially labelled.
I believe I will get to polish off all of them!
Meanwhile, here are the photos my Doc and I exchanged:
![]() |
| What a difference 3 1/2 months make! |
Tuesday, November 4, 2014
Victim of Summer
Remember my cousin I mentioned that was diagnosed with lung cancer
mid August this year? She passed away early morning November 1st.
That was quick. She had been visiting with me at our house just a month before she passed while trying alternative medicine nearby.
She was able to meet her brand new grandson just 12 days before she passed if that's any comfort. She even looked pretty good on the photos they posted on Facebook of that special occasion.
So I started thinking again about the Sentinel Lymph Node biopsy (SNLB) that wasn't done, and the "whys" and "wherefores" of the whole summer Melanoma debacle.
I finally got the nerve up after my visit with my Dermatologist to email #3 Plastic surgeon and ask what he would have done had he not been on vacation and had done my surgery. The dermatologist had told me that had I gone to the #2 Plastic surgeon first, he would have done the SLNBx prior to the excision. #3 Plastic surgeon#3 emailed back immediately and told me the same thing.
Now, I have no other option. The lymph flow has been interrupted with the wide excision and extensive reconstruction on the left side of my face.
I wondered - why the decision to go ahead and do the surgery then? Perhaps an answer would help assuage my mental discomfiture.
I emailed the original Plastic surgeon #1 that did my excision and asked him. Here is his reply:
Not many therapeutic options exist for melanoma as no regimen prolongs survival. Surgery is the only proven treatment for melanoma.
I have to think on this awhile. A decision to have a full node dissection is not one to be done frivolously. That is, if I could even find an MD that would even attempt it.
Meanwhile, I am going to go to counseling to deal with this and I am avoiding my GP's suggestion to start on other medication for the anxiety I get from all this trauma and drama. (She actually approves of me trying alternatives first. She isn't a pill pusher)
It's not good being an RN while dealing with this. We know what the facts are, we know what we are supposed to do, who to contact, where to get support and we know our knowledge should assist us in coping.....after all, doesn't it help our own patients?
Or does it?
I am questioning the validity of my whole career at this point.
That was quick. She had been visiting with me at our house just a month before she passed while trying alternative medicine nearby.
She was able to meet her brand new grandson just 12 days before she passed if that's any comfort. She even looked pretty good on the photos they posted on Facebook of that special occasion.
So I started thinking again about the Sentinel Lymph Node biopsy (SNLB) that wasn't done, and the "whys" and "wherefores" of the whole summer Melanoma debacle.
I finally got the nerve up after my visit with my Dermatologist to email #3 Plastic surgeon and ask what he would have done had he not been on vacation and had done my surgery. The dermatologist had told me that had I gone to the #2 Plastic surgeon first, he would have done the SLNBx prior to the excision. #3 Plastic surgeon#3 emailed back immediately and told me the same thing.
Now, I have no other option. The lymph flow has been interrupted with the wide excision and extensive reconstruction on the left side of my face.
I wondered - why the decision to go ahead and do the surgery then? Perhaps an answer would help assuage my mental discomfiture.
I emailed the original Plastic surgeon #1 that did my excision and asked him. Here is his reply:
Hi CC,So now the dilemma.
I just saw your message on facebook and got your email.
It’s great to hear from you, I had been meaning to give you a call and see how you are doing. I’ll write some thoughts here in this email and maybe tomorrow you can give me a call here in Saskatoon, my number is XXX-XXX-XXXX.
The information you received from Dr. Plastics#2, Dr. Dermatologist and Dr. Plastics#3 is correct, for your depth of melanoma (2.3mm intermediate thickness) a SLNB is recommended.
I was aware of this recommendation as well and attempted to refer you to a surgeon either plastic or general to provide this service as I don’t do the procedure myself. Referrals were sent to the Cancer care group in Abbotsford and we got a rather impolite response from them saying they would only see you after excision. Referrals were then sent to Dr. Dermatologist, Dr. Plastics#2 and Dr. Plastics#4 and again we were getting no active response. I spoke with Dr. Plastics#2’s office and they let me know he was away and had me direct the consult to Dr. Plastics#5 in the same office which I did.
Time was passing and your melanoma was not being treated, I had not received any definitive plan or response from my referrals and it became a situation for me to make a decision of whether we should continue to wait longer or go ahead and remove the tumor and leave the decision to carry out a SLNB after excision up to the surgeons I mentioned above. The data that we have (and is again shown in the study you mentioned) shows there is no overall survival benefit to SLNB. There is, however, overall disease-free survival benefit to doing a SLNB vs not. The overall disease free survival benefit at 10 years is 71% vs 65% to observation.
So my thought process at the time was weighing the risk of making you wait longer to remove your melanoma, this time frame I had no idea how long it would take probably in weeks to months given the availability of the surgeons in the region I was trying to refer you to, versus getting your melanoma out to put a stop to the risk of metastasis. Was this the right decision? I believe it was. It’s easy for the surgeons you have spoken with now to say “yes you should have had a sentinel node” and I completely agree with them, but would they say the same thing if the question was should you wait and extra 4/6/8 or more weeks with an aggressive melanoma growing on your face during that time to be able to have the sentinel node procedure. I felt the risk of the melanoma spreading deeper or going to you lymph nodes during that extra amount of time was a major concern. If I would have had an immediate response from my referrals I would have certainly sent you to have to node biopsy without question with reconstruction by their group or by myself.
During this time you and I were in contact frequently it was clear that the urgency of tumor removal was concerning you significantly and rightly so. It is a very real possibility that should you have waited to get the node biopsy and then excision, your tumor thickness could have been much greater, mets could have went to your lymph nodes during that delayed time rather than having the lesion removed to stop this process completely. I believed and still do believe that a 6% difference in overall disease free survival at 10 years wasn’t worth the risk of making you wait an undetermined amount of time to have your melanoma excised.
I hope this explains the situation from my perspective. I was truly concerned about about the spread of the lesion and did my best to treat you.
You mentioned in your email that they told you they cannot do a neck dissection and I believe you are referring to if you had a positive sentinel node then they would have done a full node dissection. I just want to clarify that you certainly can and will have a full neck dissection should you have a recurrence ie. feel a lump in your neck. You should have a physician examine your neck regularly and check for yourself.
I will speak to my colleagues here in Saskatoon regarding your situation and if they have any recommendations. There are patients who have SLNB after wide local excision even though the drainage patterns may have been altered. There is also evidence (have a look on pubmed) to support this and is why I still wanted you to get in to see someone who could offer you this. The decision to perform a SLNB after excision is surgeon dependent and some may recommend just going ahead with a full node dissection which may be of interest to you. This procedure does have risks and isn’t something to do without a lot of consideration especially since the decision would be to have it with no clinical recurrence noted. If the fact of not currently knowing your node status is really bothering you and this is something you would like to explore I will do everything I can to help you make that decision and get you into see someone who will offer you this procedure.
Sorry for the long email and I hope this helps. Please give me a call and we can discuss things personally and feel free to contact me anytime by phone or email.
Sincerely,
Plastics #1
Not many therapeutic options exist for melanoma as no regimen prolongs survival. Surgery is the only proven treatment for melanoma.
I have to think on this awhile. A decision to have a full node dissection is not one to be done frivolously. That is, if I could even find an MD that would even attempt it.
Meanwhile, I am going to go to counseling to deal with this and I am avoiding my GP's suggestion to start on other medication for the anxiety I get from all this trauma and drama. (She actually approves of me trying alternatives first. She isn't a pill pusher)
It's not good being an RN while dealing with this. We know what the facts are, we know what we are supposed to do, who to contact, where to get support and we know our knowledge should assist us in coping.....after all, doesn't it help our own patients?
Or does it?
I am questioning the validity of my whole career at this point.
Friday, September 5, 2014
I might be Dead, but I'll have Perfect Teeth.
I went to Plastic Surgeon #3 yesterday (the one that was supposed to do my original surgery, but was on vacation) and had a discussion about what the next step would be.
"What do you want to do ?" he asked.
"Simple," I explained " I don't want the Melanoma to re-occur, and if the best chance of that not happening means further surgery, that is what I want. But I do want to know the reasoning behind doing surgery vs not doing surgery and what do they base their decision on?" I wanted to know what the disparity was between the docs and what data they use to back up their opinions.
So Plastics#3 right then and there, got out his dictation recorder and dictated a letter of reference to the Oncologist/Dermatologist to request a formal meeting with me and then make a recommendation.
I figure I have enough time for that to happen. Then I have an appointment for follow up with Plastics#3 on September 25th and we will go from there. He does say that he can do reconstructive surgery without destroying what is already done. I was worried about that.
Another reason why I want things to get going is because I have other lesions and moles around on my body that I need reviewed by a Dermatologist.
So it's one more "hurry up and wait" situation, and meanwhile - I am still off on sick leave.
I can't imagine trying to making sense at work while all this tumultuous stuff is going on.
I wouldn't have time to fit work in my busy appointment schedule plus all the follow-up on everyone to make sure something actually happens.
At this point I can't trust anyone but myself.
Good news is, according to my dentist, my teeth and gums are perfect.
"What do you want to do ?" he asked.
"Simple," I explained " I don't want the Melanoma to re-occur, and if the best chance of that not happening means further surgery, that is what I want. But I do want to know the reasoning behind doing surgery vs not doing surgery and what do they base their decision on?" I wanted to know what the disparity was between the docs and what data they use to back up their opinions.
So Plastics#3 right then and there, got out his dictation recorder and dictated a letter of reference to the Oncologist/Dermatologist to request a formal meeting with me and then make a recommendation.
I figure I have enough time for that to happen. Then I have an appointment for follow up with Plastics#3 on September 25th and we will go from there. He does say that he can do reconstructive surgery without destroying what is already done. I was worried about that.
Another reason why I want things to get going is because I have other lesions and moles around on my body that I need reviewed by a Dermatologist.
So it's one more "hurry up and wait" situation, and meanwhile - I am still off on sick leave.
I can't imagine trying to making sense at work while all this tumultuous stuff is going on.
I wouldn't have time to fit work in my busy appointment schedule plus all the follow-up on everyone to make sure something actually happens.
At this point I can't trust anyone but myself.
Good news is, according to my dentist, my teeth and gums are perfect.
| speaking of major reconstruction: The Port Mann Bridge, old and new. |
Tuesday, September 2, 2014
"We all have to go sometime"
One of the things that surprised me in the real world, is how uncomfortable people can be with the word cancer when it happens to someone you know. When confronted with the reality, it can be an awkward subject.
What do you say? Is it OK to talk about death? Is it OK to be happy and joke around about it?
I had found it amusing when a friend at a recent wedding came up and was morosely discussing that "we are all heading down the same path to the end". I didn't know what to say at the time because with nursing, death is a natural (albeit sometimes unexpected) occurrence and not always as sombre as one would think.
Telling Knots just wrote a wonderful blog post about this very thing - and how she used to respond to the comment "We all have to go sometime" with "Yes but some of us already have our boarding pass".
After some reflection, she switched the analogy from "boarding pass" to "being on standby" and then analyzed the different ways one "waits".
You have to go there now and read her very thoughtful and amazingly crafted blog post. It may change your attitude!!
It certainly changed mine.
Now, it's just a matter of keeping it there.
What do you say? Is it OK to talk about death? Is it OK to be happy and joke around about it?
I had found it amusing when a friend at a recent wedding came up and was morosely discussing that "we are all heading down the same path to the end". I didn't know what to say at the time because with nursing, death is a natural (albeit sometimes unexpected) occurrence and not always as sombre as one would think.
Telling Knots just wrote a wonderful blog post about this very thing - and how she used to respond to the comment "We all have to go sometime" with "Yes but some of us already have our boarding pass".
After some reflection, she switched the analogy from "boarding pass" to "being on standby" and then analyzed the different ways one "waits".
You have to go there now and read her very thoughtful and amazingly crafted blog post. It may change your attitude!!
It certainly changed mine.
| Photo: August 31, 2014 |
Now, it's just a matter of keeping it there.
Sunday, August 31, 2014
Occupational Hazard: Latex
I knew I was allergic to Latex.
Two years after I started L&D, I noticed a rash while wearing the only gloves supplied at the time - Latex. There were no other options. I started using the thin filmy plastic liners instead.
Because of my history with latex gloves, when I was booked for my cholecystectomy it was mandatory to have an allergist test me for latex allergy before I went for surgery. Sure enough, I tested positive and became "officially allergic".
So, when I fell down some uneven steps while on vacation in Mexico a year and a half ago injuring my wrist (among other things - and no, I was not under the influence!) my girlfriend and I - both nurses - decided I didn't need to go to a hospital, we would just treat it ourselves.
What the heck, my tetanus, Hep A and Hep B were all up to date - it was just a matter of cleaning the scrape and reducing the swelling an inflammation.
I found out quite quickly that the ace wrap I applied had latex in it. I should have thought before applying it, but I just didn't think. At that point it was probably the pain killer (2 margaritas) that dulled my sensibility.
Then, when I got home - I don't know how on earth it happened - I fell down our stairs (once again, no drinking involved!) injured my same wrist and this time I thought I had better see someone about it.
I went to the Walk in clinic where the MD figured it wasn't fractured but he gave me a requisition for an xray anyway.
Bought myself a splint for my wrist to immobilize it - and realized how difficult it was to find a splint without latex.
Anyway.
After my melanoma surgery I needed to cover up my incision with gauze because there was a little bit of oozing - and lo and behold - I get a rash where the paper tape was.
See that red strip at the bottom of my neck?
I guess I am also allergic to adhesive.
Two years after I started L&D, I noticed a rash while wearing the only gloves supplied at the time - Latex. There were no other options. I started using the thin filmy plastic liners instead.
Because of my history with latex gloves, when I was booked for my cholecystectomy it was mandatory to have an allergist test me for latex allergy before I went for surgery. Sure enough, I tested positive and became "officially allergic".
So, when I fell down some uneven steps while on vacation in Mexico a year and a half ago injuring my wrist (among other things - and no, I was not under the influence!) my girlfriend and I - both nurses - decided I didn't need to go to a hospital, we would just treat it ourselves.
What the heck, my tetanus, Hep A and Hep B were all up to date - it was just a matter of cleaning the scrape and reducing the swelling an inflammation.
I found out quite quickly that the ace wrap I applied had latex in it. I should have thought before applying it, but I just didn't think. At that point it was probably the pain killer (2 margaritas) that dulled my sensibility.
Then, when I got home - I don't know how on earth it happened - I fell down our stairs (once again, no drinking involved!) injured my same wrist and this time I thought I had better see someone about it.
I went to the Walk in clinic where the MD figured it wasn't fractured but he gave me a requisition for an xray anyway.
Bought myself a splint for my wrist to immobilize it - and realized how difficult it was to find a splint without latex.
Anyway.
After my melanoma surgery I needed to cover up my incision with gauze because there was a little bit of oozing - and lo and behold - I get a rash where the paper tape was.
See that red strip at the bottom of my neck?
I guess I am also allergic to adhesive.
| Aug. 1 2014 |
| this was Aug 19th. |
Friday, August 29, 2014
Aaaaand!! Here I am in the Quicksand... help?
So.
I got a phone call today from the sweet assistant at the Surrey Cancer Clinic who advised me that Dr Dermatologist (I am replacing actual MD names for the type of MD they are so as not to confuse) won't be seeing me until a lymph node biopsy and a wider excision is done on my face.
I phoned the Advocate at our Health Authority that works as liaison for the Insurance company to see if she could do anything. Often they can slip you in a little quicker if appointments need to be made. She suggested seeing my own GP to see what she can do (which I have already done) so that was that.
I did phone the surgeon's office where my original surgery was booked, only this time Dr Plastic Surgeon#3 is back from vacation. The office gals patiently listened to my whole story and then suggested I email Dr Plastics#3 himself with the info.
Gladly, I said. I needed to let him know what was walking into his office next week.
Here is my letter:
Dr Plastic Surgeon#1 did a wide excision of the Invasive Malignant
Melanoma on my Left Cheek on July 25th in your place while you were
gone. Initially he indicated that I would probably have to have a lymph
node bx done post surgery.
Post operatively, I was referred to Dr General Surgeon for the lymph
node biopsy and also a referral was sent to Dr Dermatologist for follow up.
After my second post op visit with Dr Plastic Surgeon#1, I called Dr General Surgeon's
office to discover he was on vacation until the following week, so I
called at that time (August 13) to see when my appointment would be and
left a message.
By the end of that day Dr General Surgeon's office phoned and told me that they had let your office know before they left for vacation on Aug 1st that they had sent back the referral to your office and would not be seeing me because I would need further excision done on my face since what was done already was "insufficient". (Dr GenSurg actually came on the phone at that time)
Dr Plastics#1 tried to make connection with Dr
GenSurg's office and also Dr Plastic Surgeon#2's office but he stated that due to his
unfamiliarity of the system in this area and no familiar connections
with the MDs in the area, he was having difficulty getting through. He
also told me that I was "falling through the cracks" as a result, but
told me that he was sure I would be my own advocate!
I did phone the Abby Cancer clinic and also the Surrey Cancer clinic and found that my file was "on hold" until further testing was completed. I called my GP for an appointment the next day and saw her on August 19th and she made a referral to Dr Plastics#2's office.
I saw Dr Plastics#2 who kindly fit me in on August 21st and was told
by him during my appointment that the margins were indeed sufficient
and furthermore, I would not require a sentinel lymph node bx or any
adjuvant therapy. He explained it is difficult to find the sentinal
nodes and also there could be potential damage done to nearby structures
and nerves from "digging around". He then said that they would refer me
to Dr Dermatologist for follow up.
Dr Plastics#2's office did put in the referral to Dr Dermatologist but
it was sent to the White Rock office instead of the Cancer Clinic and
when I called Dr Derm's office, they stated that they returned the
referral to Dr Plastics#2's office, as Dr Derm doesn't see Melanoma
patients in his office - only at the Cancer Clinic. I called the Surrey cancer clinic who stated
that she will talk to Dr Dermatologist about my case when he was at the
cancer clinic there on Friday (today).
I then called the Cancer Clinic in Abbotsford and apparently
my file there is "on hold" but Dr Oncologist had made a notation
that I do need further excision and a lymph node biopsy done. I
requested that this information be sent to all the surgeons/MDs involved
in my case but because I am not an "official" patient at that clinic at
this time, they cannot do that.
Same with Dr Derm: when I requested the assistant to
send this information that I need further excision and a SLNB to the
surgeons/MDs involved in my case, they declined because I am not an
"official" patient until the wider excision and sentinel lymph node
biopsy is done and I am *actually* seen by him as a patient. They weren't hopeful of a connection with Dr Plastic Surgeon#3 due to the busyness of Dr Derm's practice.
So you can see I am in limbo here. Neither the Oncologist nor
the Dermatologist will see me until further excision and the SLNB is
done - yet so far I have had both Dr Plastics#1 and Dr Plastics#2 tell me that
the margins are sufficient - and there are no further referrals to
anyone that will do the surgery.
I will be seeing you on September 4th. I know everyone is
busy with appointments and actual patients that they are seeing (I am an
RN and have worked in the system for 37 years and know how this is!)
but if it is possible to find some way to have an agreement between Dr Dermatologist and Dr Oncologist and yourself as to whether or not the margins are
sufficient - I would really appreciate it.
You can understand my frustrations in this ( I have left out a
lot of other phonecalls and discussions I have had with the Cancer
Clinic in Abby and Surrey - apparently referrals and information
are mistakingly being sent to one or the other so no one has the full
picture - told to me by Dr Derm's assistant at the Cancer Clinic-
due to my involvement at both centers since I live in X town and
Abby doesn't deal with Melanomas and Surrey is the center for
that)
All I would like is a resolution to the question of what is
"sufficient margin" and participation in the decision. I realize this
is my face and there is the problem of my lower lid becoming involved
but in my head "total melanoma removal to prevent reoccurance" trumps
everything.
Also, re: the SLNB: From what I gather with the Final trial report of sentinel-node biopsy vs nodal observation in melanoma (N Engl J Med 2014 Feb 13) there is benefit to having a SLNB done, and I would like participation in that decision also.
I appreciate you seeing me on September 4th and look forward to our meeting.
Regards,
R(etired)N
To which he replied, quite promptly, I might add:
"I shall see you on the fourth and assist in advocating on your behalf to be seen by the cancer clinic. "
*sigh*
I have my fingers crossed and I am hoping that I really am not my only advocate in this abysmal system that is quickly sucking me under.
And just like these jokes, it's so terrible - it's actually funny:
I got a phone call today from the sweet assistant at the Surrey Cancer Clinic who advised me that Dr Dermatologist (I am replacing actual MD names for the type of MD they are so as not to confuse) won't be seeing me until a lymph node biopsy and a wider excision is done on my face.
I phoned the Advocate at our Health Authority that works as liaison for the Insurance company to see if she could do anything. Often they can slip you in a little quicker if appointments need to be made. She suggested seeing my own GP to see what she can do (which I have already done) so that was that.
I did phone the surgeon's office where my original surgery was booked, only this time Dr Plastic Surgeon#3 is back from vacation. The office gals patiently listened to my whole story and then suggested I email Dr Plastics#3 himself with the info.
Gladly, I said. I needed to let him know what was walking into his office next week.
Here is my letter:
Hello
It
was suggested to me by your staff to send you an email and give you the
heads up on an appointment I have with you on September 4th. My
apologies in advance for such a long email!By the end of that day Dr General Surgeon's office phoned and told me that they had let your office know before they left for vacation on Aug 1st that they had sent back the referral to your office and would not be seeing me because I would need further excision done on my face since what was done already was "insufficient". (Dr GenSurg actually came on the phone at that time)
I texted Dr Plastic Surgeon#1 what Dr GenSurg had said about the
"insufficient margins", and Dr Plastics#1 texted me back to confirm that
yes, the margins were sufficient and in the office visit he stated that I
probably wouldn't require a lymph node biopsy after all.
I did phone the Abby Cancer clinic and also the Surrey Cancer clinic and found that my file was "on hold" until further testing was completed. I called my GP for an appointment the next day and saw her on August 19th and she made a referral to Dr Plastics#2's office.
Also, re: the SLNB: From what I gather with the Final trial report of sentinel-node biopsy vs nodal observation in melanoma (N Engl J Med 2014 Feb 13) there is benefit to having a SLNB done, and I would like participation in that decision also.
To which he replied, quite promptly, I might add:
"I shall see you on the fourth and assist in advocating on your behalf to be seen by the cancer clinic. "
*sigh*
I have my fingers crossed and I am hoping that I really am not my only advocate in this abysmal system that is quickly sucking me under.
And just like these jokes, it's so terrible - it's actually funny:
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