R(etired)N

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 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.

They did a good job of the IV insert

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 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:

What a difference 3 1/2 months make!

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:

Hi CC,

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

So now the dilemma.

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.

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. 

speaking of major reconstruction: The Port Mann Bridge, old and new.

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.

Photo: August 31, 2014

Now, it's just a matter of keeping it there.

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.

Aug. 1 2014

this was Aug 19th.

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: 



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:

Back to the merry-go-round.

I was told at the brief appointment at Dr M's office that I was to check back in a week to see when I can see Dr J, the dermatologist.   Since Dr M's office was closed (vacation time) I phoned Dr J's office.

As usual, they wonder why I am calling direct, and not allowing my own MD to follow -up.   I explain to them that my own MD was telling me I was "falling through the cracks" of the system, and if an MD tells you that - you make darn sure you are doing all of your own follow up.

I trust no one.

I asked whether there was an appointment scheduled for me with Dr J....and after some investigation, the gal said "no - we don't take melanoma patients in the office, you will have to be seen at the cancer clinic - and we returned your referral to Dr M's office".  I was told to phone Dr M's office. I am left wondering why they couldn't just send the referral over to the cancer clinic where Dr J also has privileges and sees melanoma patients???

Well, problem is now Dr M is on vacation and won't be back until the middle of next week, and the only way to get a referral to the Cancer Clinic is through an MD.   Dr J is the MD I need to see in the Cancer clinic and if he has sent the referral back......heaven knows how long I will be in limbo-land.  I guess I will find out after next week when Dr M comes back from Vacation.

So I call the Cancer Clinic and talk with a very nice person in booking and she said that she would talk to Dr J when he comes in on Friday, and see what he suggests.    I told her I do have other "suspicious lesions" that need looking at as well.  It sure would be nice to at least have those checked out.

I am losing hope that I will ever get off this merry-go-round.

As my cousin with inoperable lung cancer says....it's like slogging through a sand box.....

I know forms and referrals are a necessary evil, but sometimes the system is just too overwhelming and the cogs of the Machine move much too slow.  I now understand those persons I listen to who are ready to give up, at their wits end, who have tried everything they possibly know what to do and are grasping at straws as to what they do next.

The condition doesn't ever stay static, so meanwhile, what does one do?

At this point, I don't know what I would tell them.  I know the system and I am getting the run around. I feel the exasperation and then the let down and finally, the feeling of abandonment.

People seem nice enough on the phone, but that still doesn't get me anywhere.

So far I have called 3 surgeons (several times), 1 dermatologist(several times), 2 different cancer clinics at least 3 times each, Fraser Health Corporate office (who suggested that the problem was with the MDs and not the facilities - and told me to call the BC College of Physicians and Surgeons - and we know where THAT complaint will go - absolutely nowhere)  and my own GP quite a few times.   No one seems to know how to get me to see an oncologist or dermatologist that might know something about melanoma that can at least discuss treatment options.

Then the real kicker!!!

I think the sand in my cousin's descriptive sandbox is quickly turning into quicksand.

I finally called the Cancer Clinic in Abbotsford and a nice gal told me that a report by Dr B  - the Cancer clinic's triage oncologist -  after looking at my post op biopsy report, suggests that I need more surgery.   Whether that means not enough of the surrounding tissue was removed (which is true, due to my eyelid) or whether it means lymph node biopsy - I have no idea.  The gal is going to call Jovanovich's office and she will then call back.   Dr B is not in the office and so unavailable to answer my questions.

All I can say is that there is an extreme F***up somewhere and this nightmare better get itself sorted out soon or I will lose my mind.






Follow-up to this post: 
I now have  an appointment with my own GP next Wednesday and also the Plastic surgeon that should have originally done my surgery but was on vacation......next week on Thursday.  Also, the cancer clinic called back to say the referral to the dermatologist was forwarded back over to the cancer clinic where I will be seen by the dermatologist, Dr J - possibly - next week - perhaps Friday. 

To top it all off, I have a dental appointment to have my teeth cleaned next week Tuesday.  Usually that's the worst visit of the year, medically speaking,  but right now it's looking more like a trip to Disneyland.

Lucky for me I am on sick leave because  I don't know when I would ever fit in work, the way this is all going!

Meanwhile, it's a long weekend coming up.

I now officially hate long weekends as much as I hate summer. 

I had just found out late last night that a cousin of mine was diagnosed with inoperable lung cancer so was feeling a little bummed out.

Then, almost as if by magic, I got a call from my lovely niece and her boyfriend.  She was preparing veggies and a knife went into her finger.   Remember the incident that happened several years ago with our tenant when he did the exact same thing? 

I did a quick little traige and deemed her safe to stay home and just with instructions on keeping it clean, covering it up and watching for symptoms of infection - all was well and good.

My husband wanted to see a photo, so what did she do?

Posted to Facebook.......

showing me the finger, published with permission :)

Can you tell they are theatre majors?

I can't begin to tell you how much this made me laugh.

It was a very welcome distraction.

It's so sweet when they ask my advice when injured.

The visit from my nursing buddies was such a nice interlude!

*sigh*

But now, I have to tell you the continuation of my story. If you can't remember what's gone on before this post, revisit August 11th, 13th and 15th posts.

My Plastic surgeon Dr L told me that on Monday he would be phoning the other Plastics doc - Dr M - that does lymph node biopsies.   Well.  He didn't.  At the end of the day, he texted my husband (away on business and he has the iPhone ) and told him that he had been in the OR all day and would talk to the other doc Tuesday during his office day.

That didn't happen either, as far as I know.  I told my husband to text him to tell him I would be getting a referral from my own GP.   I had already made an appointment early Monday for Tuesday noon with my GP in anticipation of this exact situation happening.  Clearly, as Dr L told me, he was the summer locum for the regular Plastic surgeon - and really didn't really know the process here.

So, noon on Tuesday  when I spilled my guts to my GP,  she sent the referral to Dr M as I sat there.  Her office assistant sent it off "URGENT".

By this time I am not trusting of anyone to call me back for follow up. 

I called back to my GP's office Thursday morning, thinking that that was enough time for an URGENT referral and perhaps my MD's office had heard *something*.  The gal that answered the phone told me she would quickly call Dr M's office and call back.

She did, surprisingly enough.    Could I get to Dr M's office within 2 hours?  He would either see me at noon or at 1 pm.    I chose noon.   I hopped in my car and drove the 70 kms  to the office.

The upshot of the visit was that Dr M's opinion was that the margins were sufficient around the melanoma and he didn't think that a lymph biopsy or adjuvant therapy is warranted.

Interestingly, I had two reactions to this information.

The Patient in me:

"What the hell? No treatment? What do you mean,  NO TREATMENT??? So basically you are throwing me out to pasture and I am supposed to wait to die....because basically that's what is going to happen without any treatment!!  I don't stand a chance! What if there are cells in my lymph nodes?  Because there is  a possibility what with the nevus having a Breslow's thickness of 2.3 - which is considered moderately high risk!!! Are you not wanting to do it because it doesn't make you as much money for the amount of time it will take to do it?  Is it because the procedure is too difficult compared to other procedures? Or perhaps someone my age doesn't have as much value?? Shouldn't it be my decision?"

Then there's the Nurse response in me:

"OK, I can see there is a level of risk here that might not outweigh the benefits such as the lymph nodes in the neck are not always clearly mapped and difficult to find.  There could be a false negative anyway due to the degree of difficulty of retrieval.  There are fragile structures nearby that could be damaged (even life-threateningly so!) and cause a lot of uncomfortable and unwanted symptoms such as numbness, swelling and discomfort, some that I may end up living with for a while - or even forever.  I do have other markers that might indicate that the melanoma may have stayed local.  But - I can see there is a final trial report that shows there may be a benefit to those with intermediate thickness melanomas.  The result would also mean accurate staging so I could get appropriate treatment albeit the treatment is questionable as to how much the treatment would affect the overall survival rate. But - can we look at the study anyway?"


There is one thing that I know - if I am to have a lymph node biopsy,  I don't want an MD operating that feels it's an unnecessary procedure  or who is perhaps unsure of his skills. 

My next stop is going to be the dermatologist (to whom I am already referred) who is supposed to be "the best in the area" for melanomas.

I am hoping for a better (or different) assessment than the Plastic Surgeon. Or at least a better explanation looking at the more recent studies out there.
 

So far, from what I have experienced, my admiration for those who have navigated "the system" has increased a million fold.   No wonder all the voiced frustrations!  Now I am chiming in - right along with the rest them, believe me!

Will this experience make me a better nurse?

Not necessarily, because this process may just kill me first.

Tecate: our new kitty.   Looking out the cat porch.  He feels just as trapped as me.

Had a delightful visit with old nursing friends from 30 - 35 years ago.    Hadn't seen either of them for at least 25 - 30  years.

It's amazing the things we talked about, everything from families to old nursing instructors to people we know - or used to know.   Can you believe we even remembered names of patients we looked after in the extended care unit when we first started nursing - 37 years ago? 

The visit was just an overnighter - a quick drive up and then back again to the home city.  But it did me a world of good.  There is just something about the Sisterhood of Nurses that is so different from any other friendships or family relationships.

I do have to admit, that in the morning, before they left, although I got out the loaf of bread and toaster, I was so caught up in the conversation that I forgot about breakfast.

I am sure they were ravenous and were just too polite to say - Hey, let's eat! - and they left with nary a bite!

I just haven't had an appetite lately with all the "stuff" going on, and I have lost about 10lbs in the last month.

At the best of times I have been known to forget to eat.

Moral of the story:  If you come to visit me,  remind me that we have to eat.  If you don't, you just may starve to death.

Hope you gals stopped for breakfast somewhere.

I am appalled at my lack of hospitality!

And I miss them already.

Peaches, a frog, wine, blackberry jam and antipasto - Thanks you two!

Got mail today.

My Union advises we don't tell our Managers anything about any illness we may have.  We are instructed to just tell them we are sick and that's that.  

Well,  I don't do that very well, because I happen to have a very nice Manager who is very compassionate and down to earth and, well.....I can't say enough about her.

So I have been telling her about everything every step of the way.....short of this blog of course.

Back to the mail.

Inside the bubble wrap envelope are two paperback books:

- "Beating Melanoma - A Five-Step Survival Guide" by Steven Q Wang M.D
- "A Melanoma Patient's Survival Guide: Lemons Really Do Make Lemonade*  *you just have to add a little sugar" by Sally Welsh

I had already stumbled upon the first book and ordered it from the library and am getting to the end of my renewal time and I was *just* thinking of perhaps going on Amazon and ordering it because I like it so much. 

I hadn't heard of the second book, but it's about one woman's adventure through Melanoma, but I am definitely going to delve into it - because lately I have had a curiosity of how other people have experienced it.

But, how thoughtful of my Manager to send me these books.

There are others that have been so supportive, some people I have never met in person but have met through Cancer Connection Canada and have chatted by email and shared their experiences.   You know who you are - and I am so very grateful for your words and encouragement.  It's like a lifeline being thrown to me as I am drowning in this sea of unknowns.

And then there are friends and family who buoy me up when I need it and make me laugh when I feel that I can't and keep me company when I don't want to be alone....

And there is my husband.  He is my Rock.  Unbelievable really.   I don't think it's just because he went through caring for his brother who died from brain cancer....I think it's just the way he is naturally.
Thoughtful, supportive, patient, loving......even when I am at my worst.

I have so much to be thankful for.... I am not even going to preface that with "I suppose".....because I know I do.

Now, please excuse me while I go read for a while!

So, the smart thing to do when you get a mortgage, is to get insurance.  Just in case.

Thing is, if you buy the insurance that they offer with your mortgage, you are actually going to be given less and less money if something happens to you or your partner, because as time goes by,  you pay down your mortgage  -  but you still shell out the same amount every month right to the end.

You see?  If you died in your last year of your mortgage - the way the mortgage company sells you your insurance, you would only get a couple hundred dollars if you are lucky, whereas the way we do it......my husband should be the lucky recipient of $250K no matter when I died.

So we mathematically figure out and  buy life insurance for the number of years we will have a mortgage,  which in this case was 10 years.

When I was diagnosed with cancer a month ago, I wasn't thinking clearly and I emailed my insurance broker that sold us the life insurance to ask how many years had passed since we bought it.  In my initial shock, I couldn't quite remember and I was too panicked to figure out where the paperwork was.

He told me 5 years, and I stupidly told him  I just was diagnosed with cancer.

Since then he has tried phoning three times, and has emailed me twice.  His emails expressed *sincere* concern, but to me, it just sounded a little off.   I didn't bother returning his calls or emails.  I was uncomfortable at the amount of concern he was showing.

I made the mistake of picking up the phone today - had to run all the way downstairs because I forgot to bring the phone with me upstairs - and I was out of breath as I said "Hello" !

I thought it might be my surgeon who was supposed to be calling me with the good news that he talked with Dr G - the MD that is going to do my lymph node biopsy.

No such luck.  It was the Insurance guy.

His first question?  "How are you feeling?"  In that quiet sombre funeral voice.  I am sure that he thought he sounded sincere but something rang hollow.  Couldn't quite put my finger on it.

It almost sounded like he was digging for more information.  Trying to get a feel for how sick I was.   Is she going to die before the term of the insurance? Will we have to pay out?  I have never heard the same question asked in so many different ways.  "Are you ok?"   "Are you getting around ok?"

It was the most awkward conversation I have ever had.

So finally,  I replied "Weeellll, I am pretty sure my husband won't be collecting insurance money any time soon"

You would think he would hang up at this point.  It was beyond awkward.

I finally had to tell him I was waiting for a phone call.

Which I was - other wise I wouldn't have picked up that bloody phone.

Finally, at the end of the day, my Plastic surgeon phoned to say he tried calling the other surgeon - Dr G -  several times and the office wasn't picking up the phone.   I told him that they only take messages and then get back to you, unless of course, you have their personal cell number like I do his.

I suggested calling Dr M instead, that he would probably be the one to do the biopsy and might have some suggestions. Dr L agreed and I gave him Dr M's phone number.  He also agreed that I was falling through the cracks, mainly because he didn't know anyone around or who to go to for information since he was only standing in for the Plastics surgeon on vacation.  I reassured him that eventually we would find someone who knew how to do a biopsy.

******
I wrote the above narrative yesterday.  

Today Dr L texted me to say that Dr M's office was closed but he would phone him first thing on Monday.

*sigh*

 I really DO hate summers.

And next time I have to double check the caller ID when I pick up the phone.  I don't need any more calls from the Insurance guy who is all concerned about the possibility of me kicking the bucket before the 5 years is up.

He should know that Life insurance is just another Lottery scam, and I have yet to win.

Sheesh.

A road near us.  It's pretty country for sure!

Really, will it never end?

As a self-advocate in this journey of mine, this morning I called the General Surgeon Dr G's office to whom I was referred to do my lymph node biopsy.  The answering voice told me to leave a detailed message.  Which I did.  And I waited for the call back.

Which they did.....at 4:50 pm tonight.

I was told by the office person who happens to be the wife of the MD (maybe I am assuming too much, but they had the same last name!) that she remembers my case and she stated that she had 19 other referrals in her inbox, but not mine.   She states she remembers telling my Plastic Surgeon's office before she left on vacation ( August 1 to Aug 12th) that they wouldn't be doing my node biopsy.  I believe she told them it would have to be Dr M....another plastic surgeon.

She even put Dr G on the phone to talk to me about it - he didn't say too much - he sounded more surprised that she handed me off to him, but he did reiterate the same thing - that they sent all cases like mine to Dr M. and that the margins taken from my melanoma were insufficient and I would need to be referred to someone else to have it excised even more plus do the biopsy and possible excision of nodes.

 At least he sounded like a pleasant guy.   He handed off the phone back to his wife who generously gave me the name and number of the office gal at Dr M's office and told me I should give all information to the other MD's gal and she would get together all the information needed for the referral.

As soon as I hung up, the phone rang again immediately - it was my realtor

"How are you?"  she asked as a polite social-conversation-starter, not as an actual question.

Needless to say I was a blubbering mess, and she got more than an earful which included bits and pieces of the conversation I had with my MD....and not in chronological order and  quite possibly partly unintelligible.

Then I asked her..."Can I help you with something?" between sniffles and sobs.

She needed more forms from the management of the property we owned that we are now selling because I am already starting to simplify our lives and put things in order, because that's what I do.

By the time that phone call ended,  all hope of phoning any of the MD's offices and getting anyone on the phone was zero.   I did try though.  

Nada.

My husband walks through the door to a frantic wife.

He had a great suggestion.

"Now, wouldn't this be a great time for your ativan? Can I get it for you?"

That's not the only good suggestion he had.

His iPhone still had the number for my Plastic Surgeon...so I sent him a message which he promptly answered:

My question in blue, his reply below it. I edited out names

 My husband's phone then rang.....it was the Plastic Surgeon.  He wanted to chat with me.

I told him everything that had been said and he told me he would talk to Dr G himself  and figure everything out and call me back tomorrow.

I apologized for taking up his free time.   He told me it was OK, he was just going into the OR.  I wished him luck - and that was the end of the call.

So - It's another night of hurry up and wait.  Thank goodness I went to my GP yesterday and topped up on my ativan and zopiclone. 

The ativan finally kicked in, but not before horrible stuff flashed through my brain nearly sending me into a vortex of panic.  "Everyone is trying to kill me!" I blubbered to my husband.

I decided breathing exercises might help.

The phone rang again.

Normally I don't answer the phone if it is suspicious, but lately, most of the calls today displaying  "unknown caller" have been important, so I picked up.

It was a Telemarketer, wanting to do a survey..........

I hate to admit this,  but I played the cancer card again.  I sniffled  "I just got really bad news,that  I have cancer and I need surgery right away and I am too devastated to talk....do you mind?"  The gentleman apologized and hung up politely with no further convincing required.

Shame on me.

Right now I feel like I am stuck on a macabre merry-go-round and I can't get off. You know, the dark kind where ugly scarey clowns keep popping up out of nowhere grabbing at you....

I am going to think positively and believe that my young MD plastic surgeon is going to come through for me.

Meanwhile, the most relaxing thing I can think of doing right now, is the hot tub.

So that's where you will find me.

Please leave a message if you call.

At first I was a little angry.

How dare someone with lots of life end it when there are so many people that are up against the unlucky lot of a life cut short - not by their own doing.

Then I realized, I am not one to talk.

I spent good part of my teen years and most of my 20s and 30s fighting depression and feeling suicidal off and on.   Only by the Grace of God...... I  guess.

It was nursing that saved me.  When I was depressed it felt good to make the sacrifices to my patients and working at doing the best I could for others.  Definitely I am living proof that doing good for someone else or "volunteerism" and being active can lift depression - or at least make it liveable.

But - I had to really work hard at it.  It was exhausting - just as exhausting as what I am going through now.

So, I suppose you could say that those who are depressed really do work hard at trying to get healthy, just as we with cancer would.  Just like cancer, eventually it can end one's life too.   It's just unfortunate that mental illness isn't something that is visible  - such as a broken leg or -  cancer! Because of this invisible malady, one isn't given quite the same empathy.

I have recently played the cancer card a couple of times (once to get information from a stubborn management company to move along the sale of our apartment, the other time to move along information to speed up an MD referral) but you don't see too many people playing the mental illness card, at least, not with the same effect.   The mental illness card turns out to be the Joker.

Instead of "let me help you" and kindness, it's a good ol' roll of the eyeballs and avoidance.  Sometimes even a snicker or two.  I have seen this happen over and over - in public and in the hospitals.

I still have bouts of depression now and again, but not as strong now that menopause has taken over my body and mind.  I pretty much roll along on an even keel these days, thank goodness.

 But I haven't ever got rid of that "little demon" on my shoulder that whispers in my ear - telling me that I am a bad person, that no one really knows the awful side of me and all the terrible things I have done (no, nothing legally wrong!) and how can people see me as someone who is good and brave and amazing and talented....how can anyone love the real me?

I just don't see it! 

Recently, I talked with a suicidal young man long enough for the police to arrive and dismantle the rope he had ready to go and whisk him away, probably to the psych intake unit.   That call hit me hard, and when it was over, I have to admit,  I took an hour off the phones to cry.  

I don't know whether I was crying in relief for him, or sadness in the reflection of my own life.

So, today, it's no longer anger I feel.  But it isn't sadness either.

I don't know what it is.

The trip to the Sunshine Coast - on the ferry.

Another reason to hate summer.

Everyone is on holidays!

First, my report of the initial biopsy was delayed because my GP went on vacation.  A substitute MD gave me the results.  Lucky for me,  she was very good.   But - she didn't know that she was premature in putting in a referral to the Cancer clinic as well as the Plastic Surgeon, and that meant my initial surgery was delayed because the Plastic Surgeon had to wait for the Cancer Clinic Triage Oncologist report to come to him and tell him the same thing the pathology report said:  "Excise the melanoma per BCCA protocol for thick melanoma."

Then, when I arrived at the Plastic surgeon's office, there was a sign telling me that all patients of Dr Brown were going to be seen by an alternate surgeon standing in for him until August 26th.   I was actually OK with this in the end, since the new MD (he's only been a plastic surgeon for a year!) did a great job!

Finally, as I stated in the last post, the General surgeon that I was referred to 2 weeks ago  to do the node biopsy and possible excision of my lymph nodes - is on vacation, and since then my referral has been sitting in a tray of his fax machine (Hopefully the paper didn't screw up!  Do people still fax stuff?)  awaiting his return in 2 days.

Now, I don't blame anyone but myself, really.   No one exists solely to be at my beck and call.  Plus, I could have had this all looked at last year when my husband started nagging me about it.

But the fact still remains.

I still hate summer.

pretty flowers from my sis in law!

I probably sounded very melancholic in my last post.

I still really need my Ativan I guess.

Sigh.

But, hey, you might want to take a look at that scar of mine!  This is a photo from just today:

Exactly 2 wks & 2 days since surgery!

 Not too bad! You can see some of the lingering yellow-green vestiges of bruising.

The little dimple up by my eye is where the plastic surgeon anchored the flap area with a dissolving suture so the lower eye lid doesn't droop as the area heals and shrinks.   That's what he told me at the last visit.  Pre-surgery I had told my Doc to leave my dimples intact please - so when I saw the new dimple up by my eye I gave him heck for adding another!   

I am getting more sensation each day in the flap area.  I am still applying polysporin on the suture line because research told me that Vaseline is the best treatment for healing, and since there had been problems with open areas....I stuck with the polysporin.    I am going to research silicone gel because research seems to suggest that it aids with healing.

My earlobe has feeling - it just feels a little bruised.    Sometimes there is the occasional pricking feeling in the incision line especially at the point of the flap just below the outer corner of my eye.  Most of the time it feels like a thumb is being pressed into my cheek in that same area or a stitch is being pulled - or ants are trying to crawl out if it.

All in all - things are going swimmingly.

But it's awful just waiting for the General Surgeon to call for the Biopsy.   I called his office on Friday when I found out who was doing the surgery (me being "proactive") and I found out he was on vacation until Tuesday and the whole office is shut down.  My faxed referral from my plastic surgeon is probably at the bottom since it was sent 2 wks ago - so I will call on Wednesday to ask about it.

Meanwhile, today I got my husband to map my moles on my back with my camera.  I have a macro lens on my Sony and interestingly enough I found a couple photos in my picasa collection dated August 2012 of a couple of the very same back moles.

Too bad I didn't document the one on my face....but hey! If my GP thought it looked "OK" in February 2014 - how would I know it was atypical?

The nevus that I had on my cheek didn't follow any of the "rules" for detecting melanoma.

I have now become hypervigilant  of all the marks all over me and I also can't wait for the dermatologist referral to go through.    I am suspecting that will happen after the Sentinel Lymph Node Biopsy (SLNB) though. 

Meanwhile, Ativan is my best friend.

Please don't judge me!

I hate summer.   

I told my husband that I can't wait for this 40C weather to end.

It used to be  - when I was a little kid - that I couldn't wait for summer to get here!

It was exciting.  Lots of other kids coming to our resort.  Splashing in the lake. Wading out to Turtle Island.  Hiking up the hills.  Cousins coming to visit.  I was the envy of my friends, living in resort country....on a resort!

Cousins that came to visit. I am 2nd from Left - blondie!

When I turned Thirteen, things changed.  Insidiously,  summers turned into a work camp.

It started out slowly -  just changing towels every other day..... followed by hanging the gazillions of towels out to dry... then the introduction of the ironing of millions of pillowcases.

By age fourteen I was promoted to cleaning motel units, cleaning the campground washrooms, waiting on tables, preparing for customers - basically round-the-clock labour.

Summers became work only - no fun.

Don't get me wrong - I am not complaining....as a result,  I have a great work ethic! 

The point is, something fun turned into something not-so-fun.

Summers are supposed to be fun - and they did become fun again once I got myself a career.

When I went into nursing, once again I could take vacations in the sun and spend time with friends at the beach or the ocean.   Heck, I could extend summer and go to Mexico and do the endless sunbathing thing! 

For 37 years,  those delicious early summer years were back.

Sun equaled fun.

So.

Now I feel I am back at 13 again.  I am looking at a mountain of pillowslips and towels and can't get to the bottom of the pile.  I can't enjoy the sun anymore.  Melanoma sucks.

Oh yeah.  And I am running out of Ativan.

My MD (GP) appointment is Tuesday and I think I still need a half a tab now and then - so I am rationing for a while until I can get a refill.

Can you tell?

Sometimes there were 5 barrels of towels.  The leg behind dad is me or my sis.

I really can't complain.

I always love having family here, reconnecting.....just being around people I have known since forever.  I wouldn't want it any other way.

But that was a very busy week.  I didn't even get a chance to get on here, just in case you didn't notice.

After at least 15 loads of laundry (at least!),  rearranging furniture, reorganizing people and their sleeping quarters to accommodate, redirecting and watching out for the folks, grocery shopping, getting food ready, going places......I was exhausted.

But I cried when my family left because I missed them.

Such a conundrum.

By the way, the wedding was spectacular.  Probably the best wedding I have ever been to, including my own!  (sorry, honey!)  I am so glad I bit the bullet and went.

They had a photo booth, and had I not left early, I was going to have my photo taken with a pirate hat on with a patch over one eye and left cheek scar right out there front and center.    That would have been a great shot!

Ha!

I also joked with my nieces and nephews who were discussing tattoos and told them perhaps I should surprise my Plastic surgeon with a cute tattoo of a huge scar with giant stitches along the nice carving he did on my cheek!  All that work.....for naught!  

Ha!

All in all, for a while I forgot that damn melanoma.

There were a few people coming up to me as if it were the last time they would see me, you know, like people do at funerals - subdued expressions ....tentatively telling me that "a bus could hit any one of us at any time"....and "we are all heading towards the end of life".   I nodded and smiled.  And agreed.

I wasn't sure what to think of that, but it was slightly amused nonetheless.

****************
 

Last night, in a now quiet house,  my husband and I watched the late night Seahawks Special (big game tonight!) and a little football quiz question came on - you know, the multiple choice kind where they give the answer after the commercial.   I took a wild stab at it, knowing nothing about football. 

Unlike my football aficionado husband, I guessed correctly!

We had a good laugh about that, and I told him that if that was any indication of my luck -  I was going to beat this melanoma thing!!!

Yes, siree!

I am going to choose to be lucky!

My Mom and Dad's wedding 1952

OK, I am a self-admitted germaphobe at the best of times.

I am not as bad as Howie Mandel, but a close second or maybe third.

I was washing airplane drop-down tabletops and armrests before it was in vogue.  (at least people no longer look at me as a crazy person while doing this)

Touching unproven surfaces was what I did with my sleeve or a paper towel.  I always washed my hands after I perused the menu at a restaurant. Keys came in handy for pressing elevator buttons and I always put wheelchair door opener plates to good use where available.

If I couldn't avoid touching a surface,  I kept my hands away from my eyes, nose and mouth because those are the portals of invasion that your hands transport to. 

I am always telling cancer patients undergoing treatment to steer clear of people who look sick - at least 6 feet away - and try and stay away from hospitals if there are other alternatives.

So now my other niece shows up on my doorstep late last night with a cold.  A virus of some sort.  Hopefully not a bacteria.

I am ready to freak out.

My brother and wife (the nurse that wanted me to fix her dress just before the wedding) popped in on their way and because the highway was closed by a fatal crash,  they brought my nephew, niece in law and their 4 1/2 year old son along as well.  It was nice to see them all - the four hour visit was just about right.

But one thing my sister-in-law neglected to mention was that her daughter was sick.

Not one mention.

I had already given her a hug and hauled her suitcase out of the car before I realized she was sniffling and coughing. 

So the #2 niece who had just arrived retired to her bedroom and I asked what her plans were for tomorrow - she wasn't sure.  She felt she needed to rest and had no plans. She was just going to "hang around" for the day.

I had thought that this was just an overnighter and normally I would love to have my nieces stay with me as long as they like, but presently, with the prospect of someone "sick" in the house,  I am panicking and am compelled to go out and buy more bottles of disinfectant to clean all surfaces #2 niece touches - and especially do a "terminal clean" (as we used to say in the hospital ) of her whole bedroom when she leaves because that's where my other sister and her husband are to be staying - tomorrow.

I am hoping I will have enough time to sweep the whole house of  viruses because my mom and dad are coming tomorrow and if they get sick -  their health is such that it would be devastating.  Getting a cold is a big deal for them.

Earlier yesterday,  if you were to ask me if I was considering going to the wedding, I might have said there was a pretty good chance.  Gauging by my reaction to one person arriving on my doorstep sick, I am thinking NOT A FREAKING CHANCE. 

If I am to be lined up with a general surgeon in coming weeks for a lymph node biopsy and more surgery - then lined up for immunotherapy at worst case scenario -  I don't want to be sick.   I can't be sick.  They won't do surgery.

Luckily my stitches are coming out first thing tomorrow morning.  That gives me the rest of the day to clean the whole house and do all the ensuing laundry - towels, sheets, bedding......

Thank goodness I still have enough ativan.

I had been feeling better and was in the midst of weaning myself off that little white pill and this little episode just set me back a smidge. 

I know I said wanted to be treated as  "normal" - but this isn't exactly what I had in mind.

I need a soak in the hot tub.

Yesterday started out ok.

Feeling very spunky, although overly medicated, I got my niece to drive me to the bank, then the local raspberry patch where I bought a flat of raspberries.

We really wanted to splurge and chow down on a whole flat, just us.

Before I could dig in, I felt this overwhelming need to vomit.

I am guessing the antibiotics are finally catching up to me.

I grab the little vomit bag I still had from my visit to the hospital in Yakima - in the days I still had a gallbladder.  I hadn't used it so I thought someday it would come in handy and stored it in my "nursing room".

Just in case. 

Thank goodness I thought ahead.

The phone rings.
It's my brother-in-law looking to speak to his niece that is staying with me.

BIL: "How are you doing"
Me: "Fine" (gasping to hold it in)
BIL: "Did Reb get there ok? How was her flight..."
Me:  *vomiting* she's....in... *vomit* ...the shower..."
BIL: "I just want you to know we are praying for you...."
Me: *vomiting*  ...can't talk now.... *vomiting*...bye...."
*click*

I can't begin to tell you how many countless phone calls I have fielded with people vomiting at the other end, and as a nurse sometimes it's a little disconcerting having to listen through the entire episode.

By hanging up so rudely, I was trying to spare my brother-in-law.  After all, it's bad enough when you are used  to hearing it....

Good news is, the construction of that little baggie with the round plastic solid opening.....everything was self contained.   No cleanup! Yay!   That's a small blessing when you are a nurse.

I had my niece  phone her dad back to apologize and see how traumatized he was. 

I am now taking gravol (dramamine for Americans) with  my antibiotics.

After all,  those raspberries won't wait!!!

This morning: Quite a few pretty yellow/green bruises with patches of purple			.  My hair full of polysporin.