I had a follow-up appointment at Moffitt Cancer Center last month.  My boyfriend came with me for moral support.  It's not an easy place to walk into.  I was my usual sarcastic self with the nursing staff - they make sure you're alive before you see a doctor.  Surprisingly, I was called in within 15 minutes.  The doctor looked at my neck, asked my a lot of questions, including if I had been seeing a dermatologist.  I said, "No, I was told to come back here and then after this appointment, I would be sent to them for regular check-ups."  Or, something like that.  Well, I guess (surprise, surprise) I heard wrong.  I should have been seeing a dermatologist every three months.  After scheduling another appointment in six months, I called USF Dermatology and scheduled an appointment for Monday, August 4th with Dr. Robyn.

The 4th rolls around and I head in there.  This is the first time I've seen her since my operation, so I thank her for finding the melanoma in the first place.  She was pregnant the last time I saw her, so I tentatively ask how her little one is - he is doing well.  I explain the Moffitt situation to her and she agrees that I should be seeing her every three months.  She looks me over, and finds two moles that are darker than the others - the "ugly ducklings" as they call them - one on my left forearm, and one under my right ear, an inch away from my scar from the previous surgery.  She's going to have to take them off and send them to be tested.  I wasn't too thrilled to hear this, but it's better to know sooner than later.  The prick of the needle is nothing compared to the burn of the anesthetic.  I joked, "9 out of 10 patients prefer the prick over the burn."  She cut the moles off and said the results would be back in three weeks.  She would call me either way (good or bad), but I would get a letter if I needed to come back in.

I had a notice in my mailbox that I needed to pick up a certified letter from USF Health.  Crap.

I made my boyfriend get up early with me on Saturday morning, so we could go pick it up.  I was prepared for the worst.  However, I had no need to be.  The letter said I had a dysplastic nevus - or what the NIH wants everyone to call, an atypical mole.  It is a type of mole that is more likely than a normal mole to develop into melanoma, though most atypical moles will not become malignant.  Although, numerous studies indicate that half of the melanoma cases arose from atypical moles.  In any case, for someone who has had melanoma before (me), the answer is to chop it off.

I waited a few days to see if Dr. Robyn would call, and after not hearing from her, I made an appointment to go in and discuss my options.  About 30 minutes after this call, Dr. Robyn called.  She wanted to let me know that the one on my forearm was nothing, just a mole, and the one on my neck was a dysplastic nevus.  She wanted me to come in and have the rest of it removed.  I told her I had just made an appointment and I would see her tomorrow.

On August 18th, same thing as last time.  I used the same joke on a different nurse about the prick of the needle versus the burn - I had a better reaction the first time.  Dr. Robyn cut it off and said I'd get the results in three weeks.  To be clear, they took a much larger area than last time.  It looks like something tried to crawl out of my neck and left a hole.  She just wanted to be sure that they got all of the atypical tissue - getting clear margins, as they call it.  I am hopeful, and I'll just have to be (a good) patient.

The pathology results came back on my lymph nodes that were removed - NEGATIVE FOR MALIGNANCY! - no further treatment is needed.

I had my first post-operative appointment this afternoon.  I was unsure if this was just a check-up or the results would be back.  I waited for an hour - this place is always busy, as I've said - and was finally brought in and met by a USF Resident in Orthopedics.  He took off my nasty bandages, asked me a few questions, said the site looked good and that he would go and get Dr. Cruse.  He would double check for the pathology results as they were not back when he checked the computer the first time.

I waited another five minutes and they both came back, said "Hello," and started looking at some paperwork.  When they told me the lymph nodes were negative, I was so relieved - the results had just come in!  I knew there was a chance of a false negative (meaning, the nodes come up as a negative, but the cancer has spread anyway) and he explained to me that there is a 1 to 5% chance of that being true.  At this time, no further treatment is warranted.  I asked if they could run any further tests, but the answer was the same.  I go back in one month for another check-up, and then again after five months, after which I will be referred back to my original dermatologist (the one that decided to send the mole off for tests in the first place - we like her!) and start regular dermatological screenings.  Go see a dermatologist!!!

I can shower as normal, treat the area with lotion, and start scar massage in another nine days.  I will need to trade out my work shorts for work pants, get a better hat, remember to use sunscreen every day, and possibly get some type of sunblocking agent with which to treat my clothes in the wash.  I can start running in a week, which means I miss this Saturday's 14 miles, but I will be good for February 23rd's Gasparilla Half Marathon and certainly for the London Marathon in April.

Many thanks to everyone for their support, kind words, thoughts and prayers.

(Funny) side note: I included a photo of my bracelets from all my Moffitt appointments.  After my first visit, I got home and went to cut the bracelet off and cut my 'Stop Rhino Poaching' one off too.  Oops.  I have since replaced it.  The green one is the surgical allergy bracelet.  10 points to Gryffindor if you know the acronym.  ;)

I had my vitals and blood taken yesterday - I was there 45 minutes before my appointment time and was admitted another hour after that - so, I think they're always busy.  After the wait, I was in and out relatively quickly - I spoke to a nurse practioner about my anesthesia.  Of course, when they drew my blood, I asked about what gauge needles they were using (21) in order to compare with what we bleed the rhinos (23).

Today was my lymphoscintigraphy - a process by which the lymphatic system is mapped through use of a radioactive isotope that was injected into my neck/jawline in four areas proximal to the melanoma.  The needles here were 25 gauge.  After several minutes passed - letting the isotope spread through my lymphatic system - a few five minute scans were taken using a SCENT CT (google failed me on that one) in order to find the sentinel lymph nodes (lymph nodes closest to the site of the melanoma and if my cancer has spread, the most likely to indicate as such).  I will not know if the cancer has spread (or not!) until the tissue and lymph nodes are removed during surgery and tested (I've been told results will take a week).  The technologist marked the two sentinel lymph nodes with blue paint (as shown below).  I then had a 20 minute 3D full body scan - during which I fell asleep...hehe.  This gives a much clearer image...blah blah blah.  I asked questions, but it was a lot of information.

Surgery is tomorrow at 7:15 am.  We have to be there at 5:15.  Yay!  My parents flew in just before my appointment today and we had a great dinner at Gino's.  I'm very glad they will be there tomorrow.  Time to pick out some cute underwear for tomorrow in case a nurse gets curious.  ;)  Who knows?  Maybe I'll meet the love of my life.

I'll post another update as soon as I'm home.

I suppose the alternative title for this post could be "I Had Cancer, Part 1," but that remains to be seen.  My surgery has been scheduled - it will be Friday 1/31 at 7:15 am.  My parents should be getting here on Thursday.  I have two pre-operative appointments this week - one on Wednesday for bloodwork and normal pre-op tests, and one on Thursday for lymphoscintigraphy - a procedure involving radioactive staining of my lymph nodes, so the surgeon can detect those closet to the melanoma site.  It appears to involve multiple stinging injections, so that sounds fun!  In any case, I'm glad I was scheduled so soon and hopefully all goes well and they do not find anything in the removed lymph nodes (though that apparently does not mean it hasn't spread...going to have to ask about this).

Well, it’s not bad news!

I had my first appointment with my oncologist – Dr. Wayne Cruse – this morning at “9am.”  Sara, my friend and co-rhino keeper, picked me up at 8am.  I showed her my newly painted apartment wall and we headed to get some breakfast.  There was a little traffic, but we hit up Panera and headed to the  Moffitt Cancer Center – just a few miles down the road from my apartment.  They have valet parking – invaluable, as the place is enormous and busy.  It felt like we were on the streets of Boston's medical district.  I will bring a camera next time – it’s really quite beautiful.  But, we were slightly late – supposed to be there 30 minutes before the appointment - so as soon as we entered the front door, I asked the receptionist where the cutaneous unit was.  We had an escort show us the way there –though he didn’t quite give us the right directions, we were close.  I signed in, filled out the paperwork 30 minutes later and was finally called to go in just before 10am.  I guess it was a busy day.

So…down to the details.

He told me that my skin cancer is a nodular melanoma and it is 1.95mm deep – an “intermediate depth, not great news, but not the worst news.”  I will be receiving a call from the surgery scheduler in the next few days to schedule my procedure.  He will surgically remove the skin and underlying/surrounding tissue – about 1-2 cm in diameter – and also the sentinel lymph nodes (10-20 nodes).  There will be a significant scar, but he is also a plastic surgeon, so that’s something.  It’s kind of ironic that I got the mole removed because I didn’t like how it looked and now I may have a worse-looking scar – but I believe not having cancer is the better of those two evils.  The removed
lymph nodes will be sent off for cancer screening.  There is a 10-20% chance that they will have cancerous cells (i.e. the cancer has spread) and further surgery (remove all my lymph nodes) and treatment (TBD) will be needed.  This also means that there is an 80-90% chance that the lymph nodes are clear and I will need no further treatment.  For those of you that are like “What the hell are lymph nodes?” – I googled it for you and found this on Wikipedia.

A lymph node or lymph gland is an oval-shaped organ of the lymphatic system, distributed widely throughout the body including the armpit and stomach and linked by lymphatic vessels. Lymph nodes are garrisons of B, T, and other immunity cells. Lymph nodes act as filters or traps for foreign particles and are important in the proper functioning of the immune system. They are packed tightly with the white blood cells called lymphocytes and macrophages.

Lymph nodes also have clinical significance. They become inflamed or enlarged in various infections and diseases which may range from trivial, such as a throat infection, to life-threatening such as cancers. In the latter, the condition of lymph nodes is so significant that it is used for cancer staging, which decides the treatment to be employed, and for determining the prognosis. When swollen, inflamed or enlarged, lymph nodes can be hard, firm or tender.

Lymph nodes are not part of the body's system for handling illnesses stemming, for example, from environmental toxicity or personal injury— those tasks are handled by the liver and kidneys in the former and the muscular-skeletal system in the latter. The lymphatic system is structured to address biological infection by other organisms as well as biological breakdowns/ errors within the same body (i.e., cancer). 
 
So….not sure how they’d remove all of them since they are throughout the body - that doesn't seem pleasant.  It is also odd to find that lymph nodes help combat infections like cancer…but are also possible hosts for my cancerous cells.  But, I don't write this stuff, so...?  I’m not sure what would happen to my immune system if my lymph nodes were removed, but I can cross that bridge if I get there.

There are still a few “What if…”s, but on the whole, it is relatively good news.  I will post an update when I have surgery scheduled.  It should be just day surgery– in and out – and my parents are coming down for it.  I had sinus surgery in 2011 (my 5th one) and they did not come down for that – mistake on my part (I told them they didn’t have to).  I had to wait so long to go in for surgery – I had too much time to think about possible bad outcomes and my parents getting a terrible phone call.   Long story slightly longer…I had a mini-breakdown though I was also drugged at the time, in a state of hyper-emotionality and hitting on the male nurses via the female nurses, so there’s that.  I do think I look good in a hospital gown (pretty much like the image below - I'm in the next bed over) and those little socks they give you are wonderful.

Written on 12/30/13, a few hours after finding out :

I'm not sure if I'll ever post this, but I've heard it's helpful to write one's thoughts down.  It is quite possible that this is the beginning of a long journey - really, it's the middle of my running journey, but now, it's the beginning of my cancer journey - and so this becomes the first document in what will hopefully be a large collection of thoughts on the subject - it is equally as possible that the journey will be a short one, and it is with this fear in my heart that I write.

I have had a red mole (I've tried to google image search and can't really find something similar) on my right jawline for about three years (as far as I can tell from past photos).  It has only been recently with an uptick in my dating life that I became self-conscious about it.  I also - for the first time since moving to Tampa - visited the doctor because of my upcoming marathon - and he mentioned working outside means I should "...see a dermatologist, they're on the 6th floor of this building, make an appointment."  The subsequent week, I did; the mole was removed in seconds; and sent off for a biopsy.  A few weeks later, I'm back in FL for two days having spent Christmas home in MA when I get a call saying I need to come in for my biopsy results.  ???  I did not feel good right away - despite friends' attempts to assuage my worries, I still felt it was bad news.  And it was.  It remains to be seen how bad, but I am still at DEFCON 1.

I have malignant melanoma - aka skin cancer.  From the biopsy, they can tell the depth of the melanoma and it is Level 4 - "deep" - it is almost through the dermis.  I was told that a doctor would be calling me to schedule an appointment and then surgery - they are removing the tissue beneath and around where the mole was and also probably taking a biopsy of the nearest lymph nodes to see if it has spread.  I have done some online research (need to cut that out) and they do this because the presence of cancer cells in the nearest lymph nodes is indicative that it has spread to other parts of the body.  The absence of them does not disprove the spread of them (it can give a false negative in terms of metastasis).  So, waiting is fun.

I am a worrier.  I am an overanalyzer.  My mind is at a mile a minute right now.

My first thought when I heard was of my grandmother.  She was an amazing woman, having battled four types of cancer throughout her life, but did not make it through the second bout of lung cancer.  My second thought was denial - I couldn't believe it.  I have cancer.  Shit. 

And then I thought of having to tell my parents, and I cried.  The PA was very nice, but I had a hard time concentrating.  I asked her to repeat things several times, a few questions...but I really won't know much more until I see the oncologist.  I keep thinking...and that is a problem...is it Stage 4? - there are no treatment options - how much time do I have? - I have treatment options - clinical trials - my life is an episode of Grey's Anatomy - losing my hair - sterility? - will I have kids? - how will I find someone with whom to spend the rest of my life? - is there even a point in looking? - will I run this marathon? - I need to write a Will - I need to plan my funeral - who will take care of my cats? - should I renew my Disney pass? - should I stop going out in the sun? - I need new work clothes to stay out of the sun - how do I tell everyone? - is it too late? - why is this happening to me?

I've seen the stories on CNN, on Ellen, through facebook - kids with cancer, BatKid, teenagers, college athletes - and I thought, "That must be fucking terrible.  I have it easy."  My life is cake.  Boyfriend breaks up with me, wah.  No hot water in the shower, wah.  That asshole cut me off in traffic, wah.  I complain all the time, but I also realize constantly how amazing my life is.  How lucky I am.  How privileged a life I have just being an American - a white male, for that matter - electricity, clean water, plumbing, police, paramedics, pharmacies, hospitals, roads, grocery stores.  And now I feel as if every moment I spent complaining was a complete waste of time.  And yet I still complain - about cancer worries (am I entitled? this is confusing) - and I still feel guilty complaining, because there are people dealing with worse.  Worse happens every minute.  One of my best friends died three months before we were to graduate high school - I have lived twelve years since then!  Almost 5,000 days!  I have been to Australia and Italy; I've seen Brad Pitt in person; I've run half marathons; I've cuddled with baby anteaters, giraffes, okapi; I take care of rhinoceros for a living!  I wish I could do it all again - I'd do more, spend more, talk more, dance more, laugh more.  Every moment is precious - I shouldn't have wasted a single one.  Why didn't I wear more sunscreen?  Damn it.

I would gladly re-live the worst day of my life over and over than have terminal cancer.  There's just no describing this feeling.  It's surreal.

Update, written right now!:

Well, I have since re-aligned my way of thinking to its more positive state.  It's no surprise - part defense mechanism, part who I am.  I have talked to a few people at work, and their stories about dealing with skin cancer were reassuring.  I'm fairly sure it was caught it time - a little part of me is still worried, but I can't do much about the past.  Cancer is a scary word, and I was scared.  I've had time to adjust to the thought of it, and I really don't feel much different.  All that is changed is that I know, and that is a good thing.  I also have realized that skin cancer (while still sometimes terminal) is not the most serious (by far) cancer I could have, and I'm thankful for that.  I am focused on January 22nd - that is the date of my first appointment with the oncologist at Moffitt Cancer Center here in Tampa.  Fingers crossed - I will post as soon as I know more.

P.S. I'm still raising money for rhino conservation!  :oP  That is this site's main purpose.  ;o)