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My personal skin cancer journey


My journey through skin cancer...

Graphic Images Below 

Let me begin by saying, my journey may have been over faster had I have had better health care options. Due to low income and no insurance that didn't happen for me. 
Also if I had paid better attention to my body it may have been over sooner. So please if you notice anything different about yourself, or how you are feeling seek help if you can. 

I noticed back in 2018 a few clusters of what I thought perhaps were moles on the side of my head, on my scalp a bit above my ear on the left side. At first I honestly thought nothing of it. I have a birth mark there that I was born with that actually is a big bald red / pink spot so I figured well after fifty two years it was nothing just par for the course. 
Well I couldn't have been more wrong :( 

I at the time was seeing a nurse practitioner at the Free Clinic here where I live, I seen her regularly as I am a type 2 diabetic also. I finally after not mentioning it one month decided on my next check up I would mention it. The thing well one of them had started growing by this point. 
She looked at it and said oh that likely is built up dry skin due to hair products, well I only use shampoo and conditioner but hey I am not a doctor right? 

By the time I went for my next 3 month visit this thing had grown to about the size I guess of a walnut and if scratched or nicked with a hair brush etc it bled. Finally I was thinking definitely not normal. And yes at this point I became scared and thinking all sorts of things...

When mentioned to the nurse practitioner at the free clinic it was decided I needed to go to UVA 
to see a dermatologist. Since there was none available in my area and who worked with the Free Clinic. 
Well for many reasons I never got to UVA. 

In December 2018 it was put out that Virginia now offered Medicaid Expansion to those who are low income, work, but aren't offered insurance. Well that is me. When I got approved I breathed a large sigh of relief knowing soon i'd finally get health care and be able to deal with whatever was growing on my head. 

In January 2019 when the insurance began first thing I did was call them to find out who I could see, I didn't even bother to get a new primary care doctor at this point. I focused my whole being on my head and whatever this thing was that was attacking me... *By this time I had the large tumor and 2 smaller ones above it* This was my only focus at the time. 

On January 10, 2019 I had my first appointment with a dermatologist in Alexandria, Virginia just about 14 miles from me. She was nice enough was my first impression. 
She froze off some skin tags she noticed, and checked me from head to toe, so I figured Okay she is good. Next she let me know she was going to do a biopsy of the large tumor. I had no idea or clue what the hell she was talking about, I haven't had anything like this in my life. 
Well it meant she was going to cut off a small piece and send it to a lab to be analyzed. 
I was told it would take 10 to 14 days before I would hear back. 
I think that was the longest two weeks of my life. 

When day 14 came and I hadn't heard back from the doctor's office I called in, I was no longer going to put my health off. 
They let me know it came back as a Basil Cell Carcinoma
okay cue panic mode for me. 

I had no clue what that was, I don't recall anyone in my family having any cancers of any type so immediately I became frightened. The nursing assistant I was speaking with let me know they were going to get me in with a MOHS Surgeon.  Okay what is that?

Well none could be found in my area who would accept the insurance I have, 
Okay where does that leave me I asked? I was NOT going to just sit around and accept that, finally I knew part of what I had going on, and I had insurance even if not the best, and NO ONE could help me?

Next Journey...
Finding a MOHS surgeon, now I have no clue why I couldn't just find a regular surgeon and to be honest I still don't but again I am going on what I was told by the doctor. 
I immediately called my insurance and pretty much begged them to find me the doctor I needed, and finally one was found in Washington, DC which again is not far from me thank god. 
I was able to get my first appointment on February 15, 2019.

I have to say at this point, I have always thought of myself as a strong woman, who never needed anyone but this day proved me so wrong... I was a nervous wreck driving myself to DC, the unknown of what this doctor would say, everything. 

First impressions mean a lot to me and I have to say I liked this doctor / surgeon although he is very young. We had a nice chat, he checked my entire head and was concerned that the last doctor had only biopsied the larger tumor and not the other two. He decided that day he would take from both of these other tumors and have them sent to the lab. (cue even more worried for me). 

It was decided I would go in for my first large tumor removal I had to get things in order, 
I would need someone this time to drive me, I had to make arrangements with my job, I knew I was going to be out of work but not sure how long. It sucked as I don't get time paid off. 

My daughter Amanda decided she would endure and come up to Virginia from North Carolina to take me for the removal on April 15th. I didn't know what to expect, could only go by what the doctor and his assistants had told me would happen.  
I was told he would slice the large tumor off, take it into their lab and check for cells, then if it wasn't all gotten he would come back and do more about hour later.

Well on this day I guess it wasn't a good day at their office. 
I had roughly a little over two hour wait, then when it came time to cut more I became scared as hell for some reason.
Doctor let me know he had to cut until they got cancer free cells, okay I thought I can do this right?
Well I was numbed and it began again, this time though I felt some pain which was weird. 
I am not going to go into the gruesomeness of this but it felt like my head had been pulled open on the left side of my head. I don't know what that even means but it's how I felt. 

After a bit of cutting, the doctor looked at down at me and said okay that is enough for today I am not going to cut anymore? 
The tumor was much larger on the inside than the outside of my head is what I gathered from the talk. 

I am not or at least never thought of myself as a vain person but I knew whatever he had done was not going to be pretty by any means. He put I think 5 large fishing line looking stitches
but the cut was left open, they said it was being left that way.

OKAY freak out time for me big time. 
I started crying my eyes out...

What next...
And I got that answer when he told me that he prefers that the patient come back in a few days after to have support for what they will see once a bandage is removed for cleaning. Well me being the asshole I can be with being strong decided to take that step one step further. After the nurse cleaned me up she left the room and when she did there is a large long mirror on the back of the room door well being the dumbass I am I decided to look and YEP I cried even more. 
I love horror movies so it shouldn't have been a surprise but I guess when it's our own being it was beyond a shock to me. 

They bandaged me up, and I went to the waiting room where my daughter was waiting. 

Later than day after my daughter went back to North Carolina and one of my family members came to visit, my head was bleeding more than it should be so I put in a call to the doctors answering service. 

He called me back pretty quickly, reassured me that the draining, dripping is okay just make sure I had no severe pain or fever. He also apologized. HUH?
He felt so freaking bad for me and how huge this wound was and at this time let me know that second round of cutting did NOT get it all :(
There is still 2 small edges of that Basal Cell Carcinoma left to get.

And of course that is not counting the Squamous cell carcinoma that hasn't been taken out yet.

I go back to see the surgeon on Tuesday April 30th for a check-up and I am praying for good words this time. I think I have earned something good out of this so far right?
I know in reality I am not alone but I through it all so far I feel like I am. 
I have a daughter here at home with me, I don't ever want to burden her as she has severe panic and depression disorders. But I know she is there if I need to talk or cry which crying is something that has become apart of my daily routine. 

I also know there are many in the world going through a hell of a lot worse than I am. 
And my heart hurts for them as well... 

Well that is all for now... I will update my journey as it happens...

I will update images if I can after Checkup on April 30th...

Me before I got dressed this morning to head to DC to the surgeons office for my checkup...
The visit wasn't very long, he showed me an image of the removal of the Basal Cell and which areas of that still have cancer cells there is small edge atop and a small edge below that has to be removed when he removes the Squamous Cell Carcinoma on May 13th. 
He explained how he will be lifting my skin away from my skull and pulling it over to close up the area and then stitch everything up once the other tumors are all removed.
 I may or may not need a plastic surgeon he said. 

Until then he did not remove my stitches, I am now to shower and allow warm water over that area to help in removing all the caked on dried blood and ooze that has built up so when surgery happens again I won't be in massive pain and he wants me to use Vaseline majorly to keep the bone from drying out? Whatever in the hell that means. 

I still can not return to work at least not until after May 13th and depending on how things go that day I will find out when I can return to work. 
I don't know how I am supposed to survive and purchase all these bandages and gauze that I need to change on a daily damn basis. I know many tell me God has me well I sure hope he does.

So that is all for now until May 13th at 11 am. 

Update before May 13th visit

Alot has happened since my last update,
 first off the practice learned that my insurance was denying their claims
they didn't follow proper protocol and
I myself tried to help them with getting their payment to no avail.

I went back and forth with the office manager in email for many days.
I was informed I would not be having the rest of the removal surgery on my scheduled date of May 13th but I was technically being given a courtesy visit to check my wound and stitch removal.
Because the surgeon of course has already cut me open.

I am not sure a doctor can only do a partial job, and leave someone open basically and hope I can find another surgeon. I have been in contact with my insurance and now gotten my primary care provider involved.
Monday May 13th I went in for my scheduled 11 am visit to finally be seen at almost 1 pm.
Surgeon and his nurse made sure to inform me I could no longer be seen by him at that practice, but that he would be there to discuss things with any other surgeon I found.
He then told me he removed all stitches and that one area was not closed yet and to just keep it clean, and bandaged. Well okay then.

I woke at around 3 am on Tuesday May 14th because my bandage had fallen off as usual and noticed there was still one stitch in my head. At 7 am I emailed the Office Manager at that practice with a photo showing stitch left in my head only to not get a response til later that day at around 4 pm.
Informing me OH the surgeon/doctor left that in to hold my wound together?
What if I had gotten my primary care doctor to remove that???

Photo of stitch and open wound area still as of May 14th

I will update again soon

Below I will share some very graphic images... 
So BEWARE and don't look down if you are squeamish...

The Basal Cell Carcinoma before removal

The Basal Cell Carcinoma after removal 

After the First Slice 

As closed as it will be for now 

May 22, 2019
I finally have found a MOHS surgeon and hope soon to get a consult I am awaiting my medical records to be sent to him or my primary doctor which they requested them back on May 14th. 
To date no one has them. 

I am not sure why this has been so difficult, I know I should now begin to look into my rights as a patient who was abandoned due to their negligence not my own. 
But for now I truly just want my head repaired, the cancers removed.

I will update again soon 

May 25, 2019

The MOHS surgeon I was so happy in finding who took my insurance has now declined to take over my health due to liability issues :( So I am once again back to hunting for a MOHS surgeon to take on my partially done head, as well as the Squamous Cell Carcinoma which has not been addressed as of yet. 

I once again emailed the prior surgeons office about the stitch in my head still and was told it can stay in for 2 to 3 months with no issues. I personally have no clue about that. 
But I just feel like no one gives a shit, I mean hello who does surgery on someone and not see their care through to the end? 
I have no idea if I am healing properly or anything else as I am not a doctor. 
I do know I will be forever disfigured. 
I have started looking for a lawyer that however as of yet hasn't been fruitful. 
But it is a holiday weekend here so I think Friday wasn't likely the best day to start my search I will continue that next week. 

A new updated photo of my wound area as of today May 25th. 
I am still keeping it covered obviously as I can tell it's still healing at the top and the stitch of course is still on the bottom, I keep vaseline on it as they suggested. 

As you can see where the large red line which is where things were cut out of there is a hill type 
deformation now of my skin/ head due to this not being finished, and the suturing redone after the pulling over of my skin to align it properly so regardless what some asshole out here may say. I AM DEFORMED at this time. 

::::Medical Update::::
Phone Call: 8:30 am 7/30/2019
The RN with the Mohs surgeon who I seen yesterday called to tell me that I will not only have a plastic surgeon attending me but they have made the decision to bring in an Oncological Surgeon as well so I will have a team working on me and my care. They were calling to update me so I wasn't confused. However after the Mohs surgeon sent all graphics to the Plastic team they made the decision to bring in Oncology...
Nurse says all will be done to make sure I am well taken care of... Now I await the consult date with this team...

My Visit : 7/30/2019
As most know I had my consult with the new MOHS surgeon in Richmond Tuesday.
First off she asked to shake my hand haha... She was happy to put a face with the woman who had such a large wound on the side of her head.. She said after seeing my images of my head from my medical records she just had to meet me.
She told me to relax, and she would in plain detail explain the plan as far as she could see this going. She also told me she would gladly answer any questions I had when we were finished. And yep I had about 22 questions written down.

1. She told me there was 2 options as far as where we go with my head. She also let me know she was able to speak with the surgeon who left me hanging on care and my response to that was: WOW you seriously got to speak to him? She said well yes why... I said well I have never once been able to speak to him I am always told he has no voicemail, or he will call me and I haven't heard shit from that office in DC in months. And when I do it's via email and only the office manager.

2. She then using her fingers on the side of my head explained what she learned from him about what wasn't done... The large area that was removed does have a small area of basil cell cancer left on it towards the lowest end.
Her concern however right now was with the Squamous Cell cancer.
She said the previous surgeon told her he stopped the surgery due to A. it being a long and drawn out procedure due to the size of the tumor that was removed. No one had any idea until they were in there just how large it was.
I went to speak and she stopped me: Yes I know in your records it states he stopped due to excessive bleeding. I nodded and let her continue.

3. She said that with its size etc it likely should not have been attempted especially in an office setting.

4. Next was the options. She stated that the main and only goal was to go about this with the least evasive approach and all the cancer removed with as minimal discomfort to me as possible as no one should have to go through what I have.

My options:
This is subject to change however once I meet with the plastic surgeons:

1. She drew in marker on my head all the way from the bottom of the current wound up and around the squamous cell the entire center would be what would need to be cut and removed and if you seen my video on Facebook that is HUGE HUGE HUGE...

2. Go the route of seeing a surgeon, let them remove the Squamous cell and anything around it they can find, I can go with local anthesia or general if I am healthy enough.
This would be the best option she said. Having a surgeon go in its pretty much once and done. Any reconstruction can be done at the same time.

A. Do NOT get my hopes up of ever having a nice flush side of my head that will not happen at this point. It's too late for that.

B. I will never grow my hair back over any scarring areas.

C. The surgeons may or may not be able to get the little piece of Basil Cell but she feels at this stage of the game it wouldn't be a cause for concern... And they can always do radiation on that if needed. Either way I will be needing to see a dermatologist pretty regularly after all this.

D. She however would not feel comfortable going in and doing anything and feels a surgeon in a hospital setting is my plan of action I only need to decide if I want to be knocked out or not. As there are risks with that option.

So next plan is: I will receive a call within 2 weeks from the Plastic Surgeons Office at VCU , they will schedule first and foremost a Consult, then I will be put through medical tests to make sure I am strong enough and healthy enough for the surgery. I asked if I should also get this clearance from my primary care she said that would be a good idea always good to have more than 1 checkup...

The option of being knocked out to do this sits so well with me, after that first fuck up I am a bit frightened and would just rather wake up knowing it's done. However that option may be taken away if I am not healthy enough to be knocked out I will have to go through it awake. So might as well not get my hopes up yet LOL ...

However after all these tests, the consult etc it looks to be at least til September maybe before any cutting will happen. And no matter which option cutting will happen. To be totally honest I hope it's the smaller cutting that is done... My head is still very sore, very bruised from April's surgery. And that is a HUGE chunk of flesh going bye bye if I go for the whole entire length and width option. For me right now least invasive, and getting it all is my only goal and focus...

I have updated today's phone call so chances of all cancer going BYE BYE BYE are excellent with Oncology onboard....

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