Fail, just a little

This is a bit of an off track post, but an important one.

We all at some point fear failure, and some people become afraid of being afraid of failure, and begin a terrible cycle. Some quit, others end up with anxiety, some try to crawl into a hole of embarrassment not wanting anyone to know they have failed.

Let's be realistic. In any given week, half of the professional sports teams, where players are paid insane amounts on money, fail. They lose. Yet they still carry on, collect their pay and play again next time. They don't sit around letting it ruin their lives. Doctors, despite their best efforts, lose patients. They don't quit, they examine what happened and try to improve for next time.

As a teacher and a person with a load of nieces and nephews, failure is a lesson kids need to learn early and often. You need to let them fail at something, not be good at something, forget something along the way. My students who have faced adversity in family, activities, school, sports, life are so much more resilient. Kids need suggestions to handle the situation instead of someone always there to pick up the pieces for them or even worse, prevent all failure along the way. At some point the bubble wrap needs to come off the kids and some dings and dents will need to happen in order to develop some character and life skills. Let them figure it out-it builds character and makes them better future adults. Don't tell them they are smart, tell them their choices are smart or that you are proud of their accomplishments. A "Smart" kid feels like a complete failure when they find out you lied to them and they aren't smart because school is now a challenge and maybe they aren't so smart after all. Suddenly they have to work and study and don't know how to do that so they quit.

I stunk at math. It made no sense to me, processing numbers was not my thing. Geometry, much better but Algebra? Epic fail, even with my Dad being a math teacher. I wasn't allowed to just quit or drop to a lower level so I had to figure it out. There were many low grades along the way and an F on an exam. I still went to college, still got into National Honor Society and learned it was not the end of the world. I learned life still goes on, bad grades or not. Not that I am encouraging bad grades all along, but it didn't become my obsession. I knew I did the best I could and carried on. I even took that semester of Algebra over again and did better. I learned some valuable lessons about that.

In college I realized Elementary Education, my first choice, was not really what I wanted to do. I had no love for the coursework and school visits cemented my decision to teach upper grades. I had failed at choosing a major. I didn't quit. I sat in the office of the History Chair and asked for some suggestions. He suggested a change in major to History Education. I was convinced I'd never get a job but he rattled off a list of successful grads in that major. So I switched, I never looked back and changing majors, admitting failure of a sort, was the best thing. I am absolutely in my element, especially since I have students tell me how much they love history because of me, or that they became teachers because of me.

So fast forward to now. Stage 3C Melanoma. I had a choice. Do I try to beat this or just quit? There are many days when quitting sounds like a great choice. But then that means dead. Not really a great choice. I had to face failure again-pituitary, clinical trial. I had to relearn how to live. What if I had given up on my arm exercises? No range of motion. I knew how much worse it would be if I didn't fight or try.

So fail, just a little. It is good for the soul. Builds character. Teaches you how to carry on and overcome and makes you stronger. You never know when you will need that strength to live.

But you are 'fine' now

I am thinking of my school friend who has a daughter dealing with cancer. Sadly people don't understand that she is trying to focus on the good things in life along with crappy cancer and that her kid is entitled to some special kid stuff and awards and such even if cancer is part of her life. There is no time limit on cancer and it stays with us for a very long time.

With that said, I also get "but you're fine now" or "the worst is over" or "time to start living again" which makes me want to scream. But then I stop and think that they want to believe this. They want to believe this because if they ever are hit with the diagnosis they can believe the fairy tale that life goes back to normal, this is temporary and there are magical things to get rid of the cancer forever. Sadly, this is often not the case.

So, yes, I am fine if this is how you define "fine"

* taking 14 pills a day to keep my body functioning
* a crater for an armpit that is throbbing right now with neuropathy feelings (you know that feeling when your foot falls asleep? I get that in my armpit and it's terrible feeling)
*scans are still every 6 months
*needing to cover up as much as possible when outdoors
*stomach virus or food poisoning can be fatal
*early menopause
*a 9 inch scar on my back that I can't reach and it itches with weather swings
*fatigue
*insomnia
*worry that there are melanoma cells lying in wait
*thyroid failure
*adrenal failure
*losing weight is a herculean effort
the list goes on......but you get the idea. It is a New Normal but I'll never be YOUR definition of FINE again.

Who Am I?

I live in NJ. I'm in my 40s and was diagnosed with Stage IIIC melanoma in the spring. So, let me introduce myself.

I'm starting my 20th year teaching history to high school kids. Absolutely love my job and the school I am in now is pretty good and is very supportive when I told them I had cancer.

I also volunteer for an animal rescue group and have had over 30 dogs in my home over the last three years. (not all at once!) We've had just about everything from puppies found in dumpsters all the way up to a purebred 8 year old Foxhound who lived for a year on a chain. It is so rewarding and the sadness you may feel when a dog leaves for a new home is quickly overshadowed by the joy of the family taking the dog. I still keep in touch with many families who have adopted dogs we've fostered and it is great to hear how well an unwanted dog is doing once they are wanted and loved.

I just celebrated my 13th anniversary with my wonderful husband. He has been an absolute lifesaver while I've been fighting this nasty cancer. He is always supportive, quick to give a hug, and has some amazing words of wisdom when I'm down. He has no doubts that we will be victorious over the cancer.

So, why a blog? Well, I've read many inspirational blogs about melanoma. I've had many people tell me they are inspired by my confidence and ability to not let this destroy my life. I have to say, although melanoma sucks, I have learned many life lessons along they way. I'll share them with you, too. Until next time.......I have a great story about how my melanoma was found. It's a team effort!

Team Member Nemo (8/20/12)

As I said before, fighting melanoma is a team effort. I have a lot of people on my team who support me in a number of ways. I'll get to them as my story progresses. My advice to you-if you don't know what to do when someone is diagnosed with a crappy disease or illness, just do something. Send a card. Call (don't worry about disturbing us-sometimes we just don't have the energy to dial and won't answer if it's a bad time). Offer to cook a meal. Above all, don't just vanish after a week or two. That's when it's the hardest-once the friends have helped, they move on. I always say my true friends are the ones who are still helping me because they 'get' that I'll be worn down for a good year or so.

Don't know what to say? Just tell me you're sorry I'm going through this. I'll tell you it has been in a strange way one of the best things to happen to me. The people who have stuck by me can see I have a new outlook on life. I don't have time for petty crap. I have done more this summer and had more fun this summer than I have in a long time. Even though I have an overwhelming semester coming up at school, I still intend to get out there and do stuff. Just not as much but when I do, I'll make sure it's something I feel like doing and want to do-as long as treatment hasn't kicked my ass.

Ah, yes, treatment. As I tell my husband, I live one day at a time and refuse to plan too much ahead so I won't be disappointed if I am having a crappy day. I also go one meal at a time because of nausea (mostly controlled by meds) and loss of appetite (funny stories about that to come).

So, my team member for today's blog as I procrastinate preparing to teach AP World History to a bunch of 9th graders in two weeks.......

Meet Nemo. He's my avatar picture for my blog because it all starts with him. See, Dave and I adopted 5 month old Carly (big black dog-they don't stand a chance in shelters, especially down south) from a local rescue group 4 years ago.  She was pulled from a South Carolina shelter after her time was up (a whopping 72 hours) We hadn't intended to get another dog (we already had Molly, our OCD lab) but we fell in love with her. Around 4th of July, she became a member of our family. She grew, and grew, and grew for 2 years and is now a 90 pound lab/chow/boxer with the sweetest disposition except she still thinks she's 40 pounds.  We kept bringing Carly back to visit the rescue and then we were asked if we wanted to foster dogs........so we were sucked into the world of rescuing animals.

I'll get back to fostering in another blog but long story short, in February of 2011, I saw these two black dogs cowering in their shelter video in Martinsville, Virginia. I knew I needed to save them. We had two foster puppies at the time and couldn't take them. I kept watching that video over and over and something about those two dogs kept pulling me back to them week after week. Finally the puppies we fostered found homes and I begged to get Nemo and Dory pulled.  We met the transport (also another blog for another day) and the guy who drove them to Mt. Holly warned us they were very shy and were hard to get in and out of the transportation crates. I literally crawled half into the crate to get them out and both stuck together like glue, obviously traumatized by their day of travel in cars from VA to NJ. The two literally climbed on top of each other and cowered in the corner. I knew I had my work cut out for me.

Turns out these two knew NOTHING about living with people and they were 2 1/2 years old. They knew NOTHING about houses. We let them adjust and they gradually came out of their shells. Dory, Nemo's sister got adopted by a wonderful couple and I always get updates so no worries about her. Nemo was another story. He had been Heartworm Positive and was thankfully treated by the shelter. We worked with him all the time to get him used to living in a house and everything was celebrated as he gradually learned to live with people who were not going to hurt him. I knew he needed to find a home but months went by with no applications that would work for him.

In the fall of 2011, he started to become obsessed with a mole on my back.  He would be standing on the bed while I would sit and get dressed and he would lick it, dig his nose into it and then start biting it. I would sometimes have to ask Dave to pull him off me because he would not quit. Then I started asking Dave why he always went to the same spot.  Dave said it was that mole on my back that he was after. I started paying attention to it and had Dave look at it. Turns out it was changing shape. I made a mental note to call after the holidays to make a dermatologist appointment to get it checked. So, Nemo saved me after being saved himself. I had a friend tell me this weekend that I have been paid back for saving dogs....I save them and they turned around and saved me.  I am a firm believer in what comes around goes around.......until next time!

Team member Nemo August 2012....he looks so much better!

this picture was from May of 2011 shortly after Dory and Nemo became our fosters. The shaved part on Nemo was where he got injections for HW treatment. He was so thin!

Today's team member-my dermatologists (8/21/12)

So, I put off making the call to the dermatologist. My brother had stuff removed that turned out to be fine. My sister had stuff checked out that turned out to to be fine......so, why rush? I know, I'm an intelligent woman with a BA and a bunch of grad classes, named one of the top teachers in NJ and STILL.......

I didn't want to have to pick a day three months in advance to go. I mean, who knows what they will be doing three months from now? I couldn't even get past three days from now let alone three months. I didn't want to have to take a sick day for nothing. I also didn't really relish having my entire body on display, either if you want to get right down to it. OH the conversation I could have with the ME of February! I've had so many people see me since then that I don't care anymore! As for who can tell what they will be doing three months later, well February Me, you were going to have your second surgery three months later. DUH.....

Why did I finally take action? Well, I hit the mole with my finger one day. The mole was right above my bra line next to my spine. The mole began to bleed a little. I got freaked out. I had also been researching why Nemo had been after the mole. Turns out some dogs have the ability to detect cancer. (We did DNA on Nemo-Rottie, Bloodhound, Cocker Spaniel are the three dominant breeds. Not sure how they all found each other but they did). Now I am getting worried.

I did what most people do- signed on to my insurance website and looked for people in my plan. I arbitrarily decided I wanted a group over a single practice. I also wanted something close. I was also getting that sinking feeling that I was headed into deep doo doo. So, I pick a group close to home and do a tiny bit of research, turns out they get great ratings and call.

I get a really nice woman on the phone and explain my situation and also explain that I have never been to a dermatologist. I know some have only like three weeks a year that they take new patients and such so I'm prepared. She says I can wait three months BUT (here's that dumb luck thing kicking in) the guy right before me cancelled his Monday 10am appointment and she really recommended that I not wait and take that appointment before she releases it back into the system. Perfect, I'll take it.

My Dad drives me to the appointment just in case they take it off so I don't have to try to drive with a numb/sore back. Rember, the most surgery I have even had was getting a cyst popped out at the doctor's office. I had never been in a hospital except for two emergency room visits. Oh, and I am a really big chicken about medical stuff.

So, I'm at UMDNJ Dermatology. A wonderful, amazing now Chief Resident takes me in. She looks, has a bunch of residents look and calls in The Big Guy (who, really is short) head of the dermatology program, with private practices on each coast. I apologize for waiting until I was 43 to see someone but chief resident put all of my concerns to rest. It happens all the time, at least I came in, no time like the present to get started, and given my history of a few burns and no tanning beds, it's ok. I felt so much better.

The Big Guy wants to take the mole off that afternoon. He's concerned but no one is really super worried about it at this point. So, as a layperson, I felt better. I get the last minute opening and I go home to have a light lunch. Almost.

AS I get ready to go, The Big Guy wants to use my back for their clinical trial for a confocal machine. What it does is go back and forth over the "Lesion" (it lost mole identity and became this ugly, scary word) just in case. It may save me future surgeries. Fine-where do I sign up. Chief Resident tells me it's good I waited until now because there are only 80 of these machines in the country (they started using then in October of 2011), my tax dollars helped buy this for UMDNJ and The Big Guy is one of three people in the entire country trained to read the results. Wow....talk about dumb luck!

The machine does microscopic scans of the mole, goes layer by layer and ends up with 400 virtual slides. Better than having it cut off and sent out. It takes a while and I have to sit still but they felt I was a good candidate. They compare the results to the actual biopsy to help get this machine to be accepted as an equal alternative.

I come back after lunch, ready to have this thing popped off and move on with my life. Chief Resident calls me in and I know there is a problem. Everyone is in the room and no one looks happy. Turns out The Big Guy spent his lunch hour reading my 400 slides. They gently explain there will be no surgery, this is bad news and needs to be done by a dermatology oncology surgeon. Thankfully I had just the scan because with the mole still in place, it will be easier to figure out if the cancer spread. "Wait!" My head is screaming-"I have cancer? Skin cancer can spread? This is really serious?????"  Chief Resident gives me a huge hug and tells me we will get through this, there are a bunch of new treatments and waiting until now actually gives me an advantage because there is more out there now than last year. She walks out with me, and keeps telling me to keep the appointment with the surgeon, you're an intelligent woman, don't blow this off, we are counting on you to prove the confocal right, and so on. Another big hug. I have to say, I believe she's going to be an amazing doctor!

The Big Guy told me the doctor he is sending me to is one of the top in the country (like himself) and has at least a three month wait. My head is now shrieking-GET THIS OFF ME NOW! However, since they are friends and this needs immediate attention and there is a clinical trial for treatment starting into Phase Three soon, he spoke to this doctor and the surgeon will see me Monday. Nothing like having someone pull strings for you.

They took tons of photos of the mole that day and a bunch right before my surgery. I guess those pictures will live forever on a power point for future dermatologists at the school!

Chief Resident calls me frequently to see how I am doing and to answer any questions. She also asks me to tell her what the doctors say so she knows I understand it. She also confirmed the Nemo prediction and said there has been a lot of research into cancer detecting dogs, just that most are trained to do it and Nemo wasn't.  There is talk of this ending up in a medical journal write up (including the Nemo story) once they have more people whose confocal matches up to the biopsy (Chief Resident took a bunch of residents to see the biopsy and compare it-it matched) She helped me schedule my three month skin check, and I'll be there every three months for a few years. Not a problem. I love the people in the office and am so thankful they didn't just remove the lesion and call it a day.

Team Warrior Women (8/22/12)

I had planned to continue the story but decided that I wanted to give a shout out to all of the Warrior Women in my life. Cancer can be a lonely place and I have built quite a support system to help me out.

The Warrior Women title came from a close friend of the family. When I went public with what I had going on, she shared her recent melanoma story with me. She also called us 'Warrior Women' because we fight on tirelessly and don't let things destroy us. (we also wonder how our parents put up with us!) She has been a tremendous source of support. The name has been kicking around for months and I recently got a nice gift and card from her family once again reminding me that we are Warrior Women.

My friend Edith is also a Warrior Woman. She's been through a lot and I know I can call her at any point and she'll set my ass back on the warrior path. She has also had many conversations informing my cancer that it is not welcome and better find somewhere else to go because it is not going to take me over. I like that about her-she takes no crap and tells it like it is.

My Reiki friend is also one of my warriors. She helped me to realize I need to get my head on straight (Who knew it was sideways all this time and why didn't anyone tell me). We also have a very powerful shared experience that sold me on this alternative stuff. I didn't tell her where my mole was located. When she got to the spot, my mole felt ON FIRE to the point I almost asked her to stop.  She told me that her hands were ICE COLD. Huh. I plan to have her come back soon to see where my head is located now.

My friend who is an oncology nurse has been another one of my warriors. She has been a great source of 'inside information' and has really helped me to stay the course as a warrior. She's quick with a hug and a smile and always has some great advice. She is also a cancer survivor and I was so beyond honored that she walked for ME at the Relay for Life. I still get warrior tears when I think about it. Next year I'll be joining Relay as a warrior survivor and I can't wait.

My sister-another warrior. She has been able to handle so much with such grace and strength the last few years. She has been a great source of support when I am having a tough time. The other day she sent me a text about how she is pretty sure I am tired of all of this by now. Yes, yes I was, but I need to keep going. She at least gave me the opportunity to acknowledge that I am tired of some of this stuff but I also have to make peace with it and deal while living life.

Another Warrior Woman-my Weight Watchers leader/part mermaid. She started the Optimism Project. I was tired of the negative life and many other people were as well so the Optimism Project was born. She has helped to keep this warrior optimistic in so many ways. I was so excited to have my surgery because of the optimism. No nerves, just let's get this done! Same thing with the clinical trial. I signed the paperwork ON MY BIRTHDAY-what better gift to give myself than the chance to kick cancer to the curb and get my life back on track. The nurse was so excited she was hugging me because of my attitude. My oncologist is so impressed with my positive attitude that she's glad I'm part of the trial-attitude is everything. My oncology nurse said to me on Monday that I'm always thinking but never upset or nervous, just asking factual questions and processing info. I'm always upbeat and energetic and she likes that about me. It is far better to be an optimistic warrior than a negative one. The armor of optimism was a great gift from the mermaid.

There are dozens of other Warrior Women out there who have helped. Thank you to all of them! I would not have gotten this far without the warriors. Oh, and men, you are not forgotten either, but this is a chick entry today.

Team Member-amazing surgeon and his shark nurse (8/25/12)

So, I go to see the surgeon. Not what I expected. I thought it would be an older, more serious, pompous dude. I mean, he is well known across the country and has lines of people waiting to see him. Oh yes, be prepared to wait-he's got a reputation for that but when he charges $600 for an office visit and everyone else is there because their doctors have operated repeatedly without success, you wait and suck it up. 5 hours was my longest wait but that was after his partner was poached to head the cancer center for an amazing university. Instead of rescheduling everyone, he volunteered to be double booked and see everyone.

So, I have no idea what to expect. In comes this smiling early 50s guy with an amazing bedside manner and a quick joke or smile. He could tell me I'd die tomorrow and I'd thank him and give him a hug. (Not that that is my goal, but that's how I describe him to people.) He's very easy to talk to and puts things into very basic terms. Dave wants to go to a bar with him sometime. My first surgery took longer than expected because the node holding the cancer was way up into my shoulder and they had to go carefully to avoid damage. He came out and told Dave it took so long because they had a hard time getting that 'bugger'. Dave liked that he talked to him like a friend and didn't use all of the Doctor Speak.

He looks at the mole and decides he's not going to take it off in office. At this point, mole/lesion is bleeding almost all of the time and even has some pussy stuff. It's changing and changing fast. I think it knew it's days were numbered and wanted to do maximum damage.  I need surgery. Ok, fine I say. He also sends me for a battery of tests. We have bloodwork, chest x-ray and the ever fun, lymphoscintigraphy scan. This scan is enough to make you want to grab your friends and scream "Get checked now!" before you have to do this. One friend needed to be held down to get the job done. I was on my stomach and they come in with these big needles full of radioactive stuff. They inject it 4 times right into the mole. Holy Pain Batman. I cried, held my breath and grabbed the table so hard. It's basically a severe chemical burn into the mole. It lasts a short time but I think it was the worst hurt, worse than the surgery. Then they lower this plate inches from your face and do the readings. Every 15 minutes they slid you further under the plates to record all lymph node activity. The goal was to find out where my mole was sending crap. They discovered after about two hours of testing that it was going to a lymph node under each arm. These little nodes were my cancer catchers. They grabbed the cells and hung on tight. I love my lymph nodes for doing that for me.

Thankfully the Cancer Institute has schedulers. They do it all for you. Doc orders the tests and the scheduler gets to work. Through their magic powers, they are able to schedule the visit with The Shark, preadmission testing, chest x-ray and Painful As Hell radioactive test for one day. Excellent. One full day but it's done. I don't think my Dad knew what he signed on for that day-we were in a few different buildings and had no lunch.

So, that day I meet The Shark. I really like her and she is no nonsense. She also teaches future nurses. I'd be afraid to be in her class. She sits me down and goes over all of the procedures that will be done on testing day. She asked if I had kids when trying to describe the radioactive test. I guess it must feel like 4 epidurals, never had one of those. She tried for bee sting then but I think she means mutant bees who are radioactive. Well, she tried. She is very realistic about things and scared the crap out of me. I guess that's her job so I follow directions. It worked. I was out walking the day after surgery to prevent blood clots, I knew when I could shower and I had a complete lesson on how to deal with things after the surgery.

I call her The Shark because she takes no crap and makes it clear she knows a lot. After surgery #2, I was supposed to see the doctor 10-14 days after surgery. You call the day after to schedule. Well, I call that Friday and am told it's a three week wait. I don't take the appointment, instead I call The Shark and leave a message. She calls me Monday morning. (I had called earlier that morning to try again for an appointment and they accommodated me.)  She asked for my version of what happened. I tell her. She says she had quite a long conversation with the schedulers to remind them how to count to 14 and that her patients are to be seen when she tells them they are to be seen. I would not have wanted to be on the receiving end of that lecture.

So, to back up a bit, I see Doc 10 days after Surgery #1 and am cleared to go back to work. I had about 80 stitches in my back in two layers......dissolved thankfully! I also had both underarms glued where he took out the lymph nodes. Oh yes, guess which of my favorite tests needed to be repeated on surgery day......yup, this time with dye instead so the receiving nodes were blue during surgery.

Doc also says he needs to go back in because the right armpit had some little itty bitty cancer cells in the glowing node. Left armpit nodes showed no cancer.

I go back for round two of pre-admission testing, but no lymph test this time. I meet with The Shark. Doc had said I'd be out of work for a week. Of course this surgery falls just before Memorial Day weekend. The last one was Holy Thursday before Easter. I ask The Shark for a note. She says I'm not going back at all and laughs hysterically when I say Doc said one week. She tells me he's a great surgeon but after that, it's her show. She pulls out her notepad and writes me out for three weeks which she predicted would becomes the rest of the school year. She was right, it would take me two full months before I felt myself again. She also scared me again about blood clots, gave me a lesson in having a drain hang out of my boob, explained the visiting nurse thing, and gave me exercises I'd need to do in order to avoid frozen shoulder. Phew....my head was spinning but I knew I had to do it-she means business!!

I go back 2 weeks after surgery, hoping the drain can come out. This may be TMI but I was tired of emptying it and measuring it and it was awkward to have pinned under clothes and hard to deal with while dressing. Nemo was obsessed with trying to bite it. I couldn't take a real shower (Glad Press and Seal......easy solution) and I could not wear a bra. He looks everything over but decides the drain needs one more week. So, bye bye school year. The drain comes out week three. I thought it would hurt but it's out in seconds before I realize it. I actually ask for a warning before he pulls it out but he shows it to me and says it's been out a few minutes now!!! He and the resident are impressed with my arm's range of motion....I worked my butt off to get my arm back in shape. So, no need for physical therapy. We also have a great discussion about Paris since I mentioned I am going next summer. He sees no reason why I can't go and says it will be their goal to make sure I get there. A few more funny comments and he gives me paperwork to see the person for treatment. He recommends a particular doctor, I make my appointment and my 6 month appointment for him and am on my way.