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.

Team Member-treatment doctor and her petite but powerful nurse (8/26/12)

On my 44th  birthday, I had the appointment with the oncologist who is going to try to save my life. My surgeon explained that I have a 50% chance that it won't come back but Melanoma is a nasty beast and does come back in some form half the time. Diagnosed at Stage 3 is frightening stuff but he said it was better than a late stage 2 (which means the mole created a bunch of clone moles to destroy me faster). Mine was just sending crap instead of making baby moles.

So, I meet with this late 30s doctor who I also love. She tells me that five years ago she would have just held my hand and told me there was nothing more she could do for me. Now there are a few drugs that are helping to keep the cancer from coming back but even those only push the odds in my favor by 5-20%. I'll take it I say. She is also impressed by the Nemo story, telling me she knew some dogs could do that but had never come across a patient in her practice who experienced it so she thought it was really cool. When residents shadow her, she tells them the story and reminds them to listen to the animals!

So, she explains the clinical trial to me after talking for a while. She thinks my positive attitude, age, good health make me an excellent candidate for the trial. I can randomly get the standard drug, Interferon or the standard dose of Ipilimumab (yeah-say that even one time let alone three times fast) or the higher dose of tongue twister drug. I need some test before I qualify and she sets me up to see her nurse in a conference room (aka small room with a few couches to remove the exam room feel).

Well, in comes this ball of fire, fast talking, energetic, very petite nurse. She's funny, great, quick to chuckle (and no matter how crappy you feel, you have to giggle too) and full of information. She goes over the clinical trial because, really, my other option is CT scans every 3-6 months with no drugs. She lets Dave and me talk it over for a bit and is ready to send us home to sleep on it. No way I tell her-we are signing NOW! She agrees but makes me call her in the morning just to be sure. Why sign then? Well, it was my 44th birthday. I wanted to celebrate it by doing the one thing that could save my life. She got so excited and was hugging me and felt it was a good omen, too.

Once again, the schedulers work their magic. I have a PET scan, brain MRI in less than a week. The only problem is my insurance has to approve it. It's Friday afternoon, I get the call that there was a cancellation and the PET can be done 8am on Saturday. CRAP. Call insurance and they tell me there is no way I'll get approval in time. I leave a message on Nurse Dynamo's voicemail. She calls me back all cheery and I'm ready to cry. She wants to know why I am so upset and I explain. She then talks me down from the ledge and says "This is not your problem. It is now my problem. You are to let this go and just show up tomorrow at 8. I have people working on this so stop your stressing. You've got other problems to worry about in life besides this." I try to protest but to no avail. An hour later, Nurse Dynamo calls back with approval numbers. Amazing.

I go for my tests. The techs are funny once they realize I've had the Painful as Hell test done. It adds an aura of respect and they tell me their test is nothing if I've gone through that. So, MRI, CT and PET scans probably would have freaked me out but I started with the worst first and it gives me a badge of honor among the radiology techs.

I talk to Nurse Dynamo every few days about something. She's great. So, the scans are clear, we do a happy dance, and then on to the trial. I need  blood work before the trial to get a starter level for everything. Ok. I'm getting over my fear of needles and can even look at my hand after an IV is put in. So, off I go for blood and EKG. The woman comes over with...wait for it......24 vials to draw. I can feel my veins shrinking already. It took about an hour because my veins kept quitting. Hot towels, squeezy ball, a second nurse's hand......it took 4 veins to get all of the blood because they quit or rolled. In the end, they got the last 6 vials from the base of my thumb. (yes, you read that correctly. Yes, it hurt, and I had to stay really, really still)

The next day I start treatment. No, it is not chemo or radiation. It is called immunotherapy. My immune system is going to be trained as a Special Forces unit to seek and destroy cancer cells in the body. I have a meeting with my doctor, we go over stuff and Nurse Dynamo makes sure I have all of the paperwork in order to go downstairs for treatment. I am getting the higher dose of the unpronounceable drug, affectionately called "Ippi".

I sign in and am told to go right in. Blank stare.  Then the woman says "First time?" and walks me to where I need to go and introduces me to the woman who will be giving me treatment. I am taken to my own little room with a glass wall right in front of the nurses station. My room has a bed and settle in for the next 4 hours. I almost pass out getting the IV in but after that I am good. I get regular IV for a while until the pharmacy gets my drug ready (each dose is estimated to cost 30 grand. Covered by the trial, thankfully because it is not covered by insurance). Then a woman comes around with a cart offering me lunch. (How nice-they take care of everything) I get a pile of food-sandwich, fruit, drinks, chips, dessert and she's off. Then my drug is ready and they set up it's IV bag. It takes 90 minutes to infuse then I need an hour of BP checks and observation. I settle in with my Kindle to read Inglath Cooper's book. I am really relaxed and feel good. The nurse checks me a lot because I'm one of the few who got the higher dose and as a first timer, they were worried I'd have problems. The time went quickly (forced down time works wonders) and my BP was really, really good when we were done. I left around 3:30.

During the treatment, Nurse Dynamo checks on me as well. One mean side effect of this drug is Diarrhea. Wonderful. I have not had issues with that-I have other side effects-fatigue, loss of appetite, and nausea. Anyway, she gives me a handout. I have to keep track of when I go to the bathroom assign it a number (hard to do with auto flush toilets-jut sayin') and keep track. I also have a check off chart of questions. I guess they tell you these details while you are hooked up to an IV so you can't easily run away. Don't get me wrong, I had been fairly warned multiple times that this was a major side effect. This was not the first time I was hearing this but it was the first time I saw what we affectionately call "The Poop Chart."  I'll end today's entry with the visual of the chart for you since people  have mentioned they want  to see the chart. I'm in trouble if I have a lot of #5s and #6s. :)

The most important team member-my husband Dave (8/27/12)

I've been putting this post of for a while now because I was afraid I'd start crying. Well, I've started crying and I haven't finished two sentences yet. We just celebrated 13 years of marriage and I know this last year was a tough one. Certainly unlucky 13!!

Dave has been a rock through all of this. I never saw him cry. He has gone above and beyond so many times. Dave has tried to go to as many doctor appointments as possible and even took off days without pay in order to be by my side. We try to pick the most important appointments for him to attend but it's not always possible. We keep in touch on appointment and treatment days through texting and quick phone calls.

So, he paced and paced and paced through my two surgeries. He took care of the dogs. He kept a ton of people updated while I was in the hospital. He held my hand while waiting and kept me conscious while the IV needles were going in. He cleaned up the rest of the garbage disaster when we got home at 1AM after surgery #1. Yes, he intended to take the garbage out but we got sidetracked when the hospital moved up my surgery time due to a cancellation. So, the pack had a grand old time tearing apart the garbage and leaving it all over the house. My mom cleaned up a lot of it when she came to let the dogs out but there was still a mess.

Dave had to take over most of the day to day operations at home. I couldn't lift anything over 5-10 pounds after each of the surgeries.....that restriction lasted for a month each time so basically from April until late July I couldn't do much. Laundry was one of the big challenges. We organized a multibasket system of dryer/no dryer, darks and lights and other stuff like towels and sheets. I am proud to say nothing turned pink and nothing got ruined.

There were several rock bottom times. I don't say bad days because I would not allow a whole day to be a waste but there were moments. My emotions were a rollercoaster and so was my body. I'd burst out in tears for the smallest thing and he'd hug me the best he could (trying to work around sore areas) and try to get me back on an even keel again. He'd listen, offer advice or crack a silly joke to help me regain perspective. He'd talk me through the rolling spasms that started mid back and would travel down my arm and back again.

Dave was my cheerleader to get my exercises done to strengthen my arm. It was hard to go back to one pound weights and I would cry through the exercises because they hurt so much but I'd get them done. Dave would cheer me on! Dave applauded my slow progress. He also came with me for some of my walks.

Showering was a two person job. We used Glad Press and Seal after surgery #2 to keep the drain area dry. I'd hold the drain bulb (I called it the grenade) and Dave would wash my hair and scrub me down. He'd usually be soaked by the time we were done and the floor was a mess but we did it. Getting dried off was also a challenge since I had to hold the grenade.  Sometimes I needed help dressing because of the grenade and range of motion issues.

Cooking was another challenge. A chicken in a pan weighed too much for me to lift. So did a tray of ziti or lasagna. You don't think about these things! A full gallon of milk was too heavy! We had lots of people dropping off meals and Dave did a good job filling in the rest. I also gave in some nights and let him get take out.

Dave was also great keeping my spirits up with gifts along the way. We had signed up for a trip to Paris with my HS for July 2013 so he bought me an Eiffel Tower statue to keep in sight while I was healing. He picked up some little stuffed things as well. He had a picture done for over the front door with our last name-an area that had nothing and the empty space bothered me. I also got what I call my anchor-I grab it when things are tough-it is a silver necklace with a starfish and a saying about how I lose and find myself at the ocean. It is very special to me.

One day he came home with San Marzano, imported from Italy seeds and pepper seeds from Italy. This was our special project to give me something to look forward to all summer. I wasn't going to do a garden but he knows how much I  love plants and gardening that he did this for me. He got soil and we planted the seeds. I had to do my garden early because surgery #2 fell right before Memorial Day, when I usually plant. It was great to get the garden in-I had a reason to spend some time outside to lose myself taking care of those plants and I appreciate the tomatoes I have now. I would have just skipped it but I am glad he knew how important it was to me to have a garden.

Dave would try to get me out when I could. He asked the doctor about me going to Easter dinner since it was just 3 days after surgery. I could go but boy was that a hard day with the muscle spasms in my back after riding the mile in the car. He also made sure I got to the Confirmation and Baptism party for my sister's two children which was also 3 days after surgery #2.

When I got frustrated, Dave gently reminded me that I've had two really big surgeries and I need to be patient. when I'd complain about sleeping so much, he'd tell me to enjoy it while I can-what does it matter, I'm home on vacation to heal. Does it really matter if I live a 3am to 3pm awake schedule? Why not nap? He really kept me grounded.

Dave keeps telling me I have done more than he ever though I could. I never thought I'd be able to go through the surgeries I had (over a hundred stitches is a lot to bear) or deal with an IV or the grenade. He reminds me a lot of what I have done so far and that helps with the upcoming port surgery. I've done so much already, why not x,y, or z???

When I was too tired to do things, he jumped in. I was overwhelmed with dog adoption follow ups so I walked him through it and he took over some days. Typing was very painful for a while and I just lacked the focus so he stepped in to try to keep me going with it without being overwhelmed. Sadly, I reached my breaking point with it because of fatigue, pain from typing, some changes in the way follow ups were being  done, and other demands on my little amount of awake time and had to give up follow ups. I just couldn't keep up.  Looking back, I am glad I did because things didn't get any easier with all of the tests and doctor visits with treatment and the side effects I wrestled with after treatment.

He was also determined to keep my spirits up and  to make this the best summer ever. We did a lot of things with his encouragement. He understood that sometimes things couldn't happen because I was in pain or just too tired but we did as much as we could. We missed 4th of July Fireworks but made it to a concert. We missed events but made it to what we could and I appreciated those events because I knew how hard I tried to make it-resting before, etc.

It was also important to give him time alone and with other people. I encouraged him to travel with a friend before surgery #2 and would encourage him to spend time with people and talk about what was going on. I didn't want him to bottle everything inside. He needs a life, too!! He also needed a break to recharge and refocus.

I think a lot of people didn't really understand what it was like day to day as I recovered. Dave saw the good, the bad and the ugly. I put on a smile and am determined to be happy and not let this destroy me but Dave saw all of it the ups and the downs. I would not wish anyone to walk a mile in the shoes I wore since April. I am not going to wallow and I think some people mistook it for "You're fine now." Nope, there's a long road ahead of me and Dave and I will travel it together.

This has been a tough couple of months and I know it is just the beginning. The last few months have brought us closer than ever and really have helped us to understand each other better. I am so glad to have Dave on my team. As he says in his numerous texts..."LOVE YA!"

Team Member-The Parents (8/30/12)

I have been able to share a lot of joyful moments with my parents:

"I got into college!"

"I got a scholarship!"

"I got the job!"

"I'm getting married!"

"We bought a house!"

"I'm JFK's teacher of the year!"

"My district nominated me for a difficult to get, prestigious award and I was one of the top five finalists in the state and am now considered an Exemplary Educator in NJ!"

The one statement no parent ever wants to hear, I'm sure, was the one I had to break to them in March of 2012.....

"Mom, I have cancer and it looks pretty bad I need surgery on my back ."

I can't imagine to pain she went through hearing those words from me. I mean, I'm her child, even though I'm 43 at the time, she's still my Mom. Dave already knew because he was at the appointment. I don't know how I would have broken the news to him so it was easier he heard it from the doctor as well.

I then had to hit them with the surgery, it's Stage Three, it spread and they don't know how much yet. I need more surgery. I need experimental treatments. I need to see a breast surgeon because of my mammogram (another story for another blog). It was not easy and I'd always be on the verge of crying. Then Dave would break the news to his parents and put them through the pain of their son having to deal with being a cancer caregiver and their only daughter-in-law dealing with cancer.

So, parents go into parent mode and offer support and help even though they are helpless because they can't make it all better.

Dad has been great. He takes me to appointments, even if we have to wait a while to see the doctor. He dropped me off and picked me up after treatment. He doesn't say much but I know he's there for me.

Mom went into Mom mode which for her means cleaning makes it all better! She and Dave's mom helped with laundry and cleaning. They kept me company. They went for walks with me. I tried to put on the brave front the best I could. Without them we'd be a mess.....they pitched in with sheets, laundry, floors, and bathroom cleaning. I think everyone knows how to use our washing machine by now!

I hit rock bottom one morning-Dave was working, I had been dealing with the drain for two weeks, wanted a real shower, had had it with everything and wanted my life back. It was a beautiful day but I was afraid to go outside. I mean, the sun had put me into this position, why go out in it??? I called Mom and she came right over. I was such a mess I couldn't even get off the bed to open the door. She found me sobbing in the bedroom and talked me down from that ledge. She then got me outside for my daily walk and talked some rational sense back into me. I am so thankful they live close and we have such a good relationship.

Mom also came to my most recent appointment with the surgeon at CINJ about some funky mammogram stuff. I think it was good for her to finally see what I call my second home and to meet some of the people who are working on the team to treat me. It was also good because she could answer their detailed family history questions better than I could. I think she felt much better after that appointment.

Mom and I were talking the other day and she gave me a big hug and said she was so glad I have a great team of doctors who know what they are doing and don't play around with this cancer stuff. Me too. I guess that thought keeps her grounded. She also has some great friends who check in on her to make sure she and Dad are ok.

My Mother In Law came the day after surgery #1. She keeps telling me how well I handle all of this which gives me the energy to keep handling the cancer stuff. We went for a walk that day even though I had over 80 stitches alone in my back and more under each arm with some glue. We did about a mile and it was really nice to have some time with her. She has a full plate already with family stuff so I try not to add to her demands but we do talk on the phone and Dave is good about keeping them updated. I think it is great that Dave has a wonderful relationship with his parents-he needs people to talk to about this as well!

So, thank you to the parents!!! So glad you are part of the Warrior Tribe!!

Team Member-The Port (9/6/12)

This is how I feel about my Weight Watchers Family. I joined many years ago, found an amazing Warrior Woman/Mermaid leader and stuck with it. The receptionists are amazing people as well and get to know you as a person. I also got Dave to join, too. Success at the scale? Well, that varies. Losing weight after 2 surgeries and a surgical procedure has been difficult but I can't imagine where I would have been without my Weight Watchers family. We have a family gathering on lime green chairs at our South Plainfield center every Saturday. Get there early if you want a seat-the meetings are packed every week! Why is my butt parked in a chair by 7:30am every Saturday? It's family......and therapy!

Weight Watchers gave me the tools to stay pretty even during my stressful year. I had changed my eating habits so much that when The Shark gave me a lecture about how I needed to eat after surgery to help my body heal, I told her I was doing all of that already. She was pleasantly surprised since many of her patients have poor diets. It was also a bit of a surprise when I was asked the question "What is the source of your food?" umm.....grocery store???? Once again, I was informed that many people relied on packaged stuff and take out. Yeah, not so much here.

However, my thankfulness for the eating habits and healthy lifestyle isn't the only reason I am writing this. It goes much deeper than food. I have made some amazing friends at the meeting. I have a better social life because of these people-we get together and do things! You know, you have those friends who you just call or see once in a while. This is different-my WW family is there in the flesh every Saturday and we get there early to talk and catch up. Sometimes we even walk before the doors open(if I can get out of the house early enough!) I love that connection. I think I get more hugs at the meeting than I get anywhere else (except from Dave) during the week. We also keep in touch during the week on Facebook, too.

So, my meeting family is also one of my biggest cheering sections. It was incredibly difficult to talk about cancer with a group of people but it has made me even closer to people in the group. I cried a lot while sharing my story and how it has changed my life, outlook, and relationship with food. I like that my leader has pushed me to talk more. I'm comfortable talking in front of kids but with adults, well, that's a different story. I can't tell you how loud everyone in the family cheered the week I was able to share that I was cancer free after my July scans!

I know I can just ask and help is there. I was almost in a bind with a ride home from the hospital. I posted it and suddenly several members were offering rides. I know all I have to do is ask and someone in the family will jump in to help. Many have offered something in various forms. Even knowing they are there if I need to vent is great.

So, we were at a cookout with a lot of members from different meetings. Many knew my story because my leader had been sharing it. So I answered their questions and had a great time with them-I can honestly say I can't remember the last time I laughed so hard at a cookout! I was battling some side effects from treatment and was sharing it with the group. What's the best way to stop a WW cookout? Tell people that you suffer from loss of appetite!!!!! I think everyone sitting by me stopped mid chew and drink, all conversation seemed to stop and they asked "What's that like???" LOL!!! Not as great as you may think!!!! It was so funny to watch the cookout come to a grinding halt with that question!!! One of the WW women at the cookout is the reason why I am blogging. We had a great conversation and she convinced me that I could write this all down and share it with you!

I met a friend who is an oncology nurse at the meeting and we have sat next to each other for years. What an amazing blessing to know her as a friend! It seemed like fate to have her in my life when I was diagnosed with Melanoma. She is my cheerleader. She keeps me grounded and offers incredible advice. She walks me through the ins and outs of treatment. My Reiki person is also a member and meeting her was wonderful-she has helped me out several times. There are several breast cancer survivors who offer support and show me that you live after this "Year of Hell" as one puts it. Their love for life is so motivating!

My family at WW means the world to me. I don't know if I would be doing so well without them. Thanks Ohana for not leaving me behind as some 'friends' have done or forgetting that I am in the battle to save my life. Thanks for holding my hand through this journey. Thank you for being there for me. Your hugs and words of encouragement are priceless and carry me through the week. I look forward to seeing you every week. I am proud to have you on my team and I've got your back too. I joined to lose weight but have gained so much in the process.

The saying for this got cut off but "The most I can do for a friend is simply be his friend."

Team Member-Weight Watchers (9/8/12)

This is how I feel about my Weight Watchers Family. I joined many years ago, found an amazing Warrior Woman/Mermaid leader and stuck with it. The receptionists are amazing people as well and get to know you as a person. I also got Dave to join, too. Success at the scale? Well, that varies. Losing weight after 2 surgeries and a surgical procedure has been difficult but I can't imagine where I would have been without my Weight Watchers family. We have a family gathering on lime green chairs at our South Plainfield center every Saturday. Get there early if you want a seat-the meetings are packed every week! Why is my butt parked in a chair by 7:30am every Saturday? It's family......and therapy!

Weight Watchers gave me the tools to stay pretty even during my stressful year. I had changed my eating habits so much that when The Shark gave me a lecture about how I needed to eat after surgery to help my body heal, I told her I was doing all of that already. She was pleasantly surprised since many of her patients have poor diets. It was also a bit of a surprise when I was asked the question "What is the source of your food?" umm.....grocery store???? Once again, I was informed that many people relied on packaged stuff and take out. Yeah, not so much here.

However, my thankfulness for the eating habits and healthy lifestyle isn't the only reason I am writing this. It goes much deeper than food. I have made some amazing friends at the meeting. I have a better social life because of these people-we get together and do things! You know, you have those friends who you just call or see once in a while. This is different-my WW family is there in the flesh every Saturday and we get there early to talk and catch up. Sometimes we even walk before the doors open(if I can get out of the house early enough!) I love that connection. I think I get more hugs at the meeting than I get anywhere else (except from Dave) during the week. We also keep in touch during the week on Facebook, too.

So, my meeting family is also one of my biggest cheering sections. It was incredibly difficult to talk about cancer with a group of people but it has made me even closer to people in the group. I cried a lot while sharing my story and how it has changed my life, outlook, and relationship with food. I like that my leader has pushed me to talk more. I'm comfortable talking in front of kids but with adults, well, that's a different story. I can't tell you how loud everyone in the family cheered the week I was able to share that I was cancer free after my July scans!

I know I can just ask and help is there. I was almost in a bind with a ride home from the hospital. I posted it and suddenly several members were offering rides. I know all I have to do is ask and someone in the family will jump in to help. Many have offered something in various forms. Even knowing they are there if I need to vent is great.

So, we were at a cookout with a lot of members from different meetings. Many knew my story because my leader had been sharing it. So I answered their questions and had a great time with them-I can honestly say I can't remember the last time I laughed so hard at a cookout! I was battling some side effects from treatment and was sharing it with the group. What's the best way to stop a WW cookout? Tell people that you suffer from loss of appetite!!!!! I think everyone sitting by me stopped mid chew and drink, all conversation seemed to stop and they asked "What's that like???" LOL!!! Not as great as you may think!!!! It was so funny to watch the cookout come to a grinding halt with that question!!! One of the WW women at the cookout is the reason why I am blogging. We had a great conversation and she convinced me that I could write this all down and share it with you!

I met a friend who is an oncology nurse at the meeting and we have sat next to each other for years. What an amazing blessing to know her as a friend! It seemed like fate to have her in my life when I was diagnosed with Melanoma. She is my cheerleader. She keeps me grounded and offers incredible advice. She walks me through the ins and outs of treatment. My Reiki person is also a member and meeting her was wonderful-she has helped me out several times. There are several breast cancer survivors who offer support and show me that you live after this "Year of Hell" as one puts it. Their love for life is so motivating!

My family at WW means the world to me. I don't know if I would be doing so well without them. Thanks Ohana for not leaving me behind as some 'friends' have done or forgetting that I am in the battle to save my life. Thanks for holding my hand through this journey. Thank you for being there for me. Your hugs and words of encouragement are priceless and carry me through the week. I look forward to seeing you every week. I am proud to have you on my team and I've got your back too. I joined to lose weight but have gained so much in the process.

The saying for this got cut off but "The most I can do for a friend is simply be his friend."

Team Member-My 'Toolbox' (9/12/12)

Prepping the end of the Neolithic Age can wait......needed to take a break so I decided to begin this entry!

Today's team members are not people. They are the 'things' that have helped me on my journey to stay alive and beat this melanoma crap. I have a dermatologist appointment on Monday with The Big Guy so keep your fingers crossed that another mole has not gone rogue. Hopefully it saw what happened to the last rogue mole and will not turn foul and cancerous.

Anyway, one of my biggest team members is a positive attitude. I have had so many people tell me how 'strong' I have been. People, it's called survival instinct!!! I mean, the alternative was to play ostrich and bury my head in the sand at the nearest beach. This was something I could not mess around with. Believe me, Dave can tell you there were plenty of times I was weak, wanted to quit, begged for my old life back, and had a crap a$$ attitude about all of this. Honestly, I really don't know how else to deal with this other than to soldier on the best I can and have a positive outlook. I guess I can chalk it up to good German and English stock!

However, I belonged to the optimism project and in a few short months of dedication, daily reflection, and focus, I knew this was my really big optimism test. My Weight Watchers leader would remind me if I hadn't posted something on the optimism project posts on Facebook. I was forced to find the positive no matter what each day. You know what? I came out of this with an intense appreciation for life. I have decided this is not going to define me in a negative way. Has it defined me? Yes, in many ways. There isn't a day that goes by without thinking about what I've been through. How I handle what comes next depends on how I handle the here and now.

Another team member has been The Walk. My primary care doctor was floored when I shared my diagnosis. His wife is a breast cancer survivor and he gave me some priceless advice (well, a $15 co-pay's worth of advice....). He said he and his wife made a pact to not allow the negative into the house. Their goal was to walk and walk and walk until they felt better and could bring the positive back in the door with them. I held on to this advice and still follow it. I did a lot of miles after surgery to keep my head clear. Some days I was out by 6am walking, rain or shine, to keep my head on straight. No music, just me and my emotional baggage. I emptied that bag onto the sidewalk as I walked. I'd come in with the mentally empty bag and carry on. Some days it was a mile, others it was 3 or 4.

The Gifts are another team member. A wonderful husband and wife team at work have been incredibly supportive. They sent me a terrific bracelet that says "Life Is Tough But I Am Tougher." I wear it to doctor appointments and treatment and whenever I need that boost. I was crying on the way home after hearing there were more cancer lymph nodes found after Surgery #2. Dave asked me to read my bracelet and told me to follow that advice and pull myself together. I have a few very special bracelets-tree of life, bravelet that says 'be brave' , and a Saint Christopher bracelet. I also have a St Peregrine medal to help as well. The most important piece of jewelry is the necklace Dave ordered for me. It has a starfish charm and a disc that says 'The ocean is where I lose and find myself'. It has become an anchor for myself and I grab it a lot. I also have a guardian angel worry stone that I carry in my purse for the waiting room at the Cancer Institute since I am usually too nervous to read while waiting.

The upcoming trip to Paris is another team member. A bucket list item for sure!!! It is a goal and every once in a while Dave picks up something with the Eiffel Tower on it to keep me encouraged. My team of doctors knows it is a goal and are doing everything in their power to get me there in July.

Besides walking, Zumba is also on my team. I work hard and sweat like crazy but it gives me some time to think of nothing but the steps. As soon as my  mind wanders, BAM, I screw up and have to refocus! It is a great distraction. I now exercise for reasons in addition to losing weight. I relish the time I have to exercise and make it a point to do it every day.

Reading has helped, too. I am able to lose myself in a book and feel refreshed and ready to go back to real life again!

"You Never Said I Couldn't"  is also on my team. My oncologist said "So, you decided to go back to work? Are you up to it?" Well, you never said I couldn't! Same for Zumba, the Gym membership, and various other things. If I don't get an explicit NO then I call it a go.......I do it because I can and I plan to do it for as long as I can. This is my life, I have a lot to do!

So, really, there is no big secret to this. Live your life. Carry on! Now back to the Neolithic People.....

Team Member-the Bucket List (9/14/12)

OK, so I do plan on being around for a LONG time.  I have a lot to do!!! However, a teacher I know is now fighting for her life due to cancer and is in the hospital. After the initial shock and impulse to cry, I channeled my inner Warrior Woman and decided to apply this to my life in a positive way. I have put off the bucket list until this happened and until I watched the clip from SU2C about a young woman who is trying to stay alive because she has melanoma-she has her bucket list and shared it.

I'm really a simple woman-not one for frills or splurges or extravagant things. My list may seem simple to many of you but I enjoy the simple pleasures in life. I put some easy ones on the list as a reminder that I can tackle things on a weekend or in a few hours-no need to fly or spend a ton of money. If you'd like to join me on one of my adventures, just let me know and I'm sure we can work it out. This is my reminder to make every day count and to enjoy life whenever possible.

Bucket List (will be revised and things I accomplish will get a line through it! Some are in the works already) in no particular order:

1. Be healthy enough to go the the Trans-Siberian Orchestra show

2. See another Broadway show

3. See another Cirque show

4. See the Macy's Fireworks (and then again on the Spirit of NJ)

5. Cruise to Bermuda

6. Cruise and do land tour for Alaska

7. Cruise to Hawaii (can you tell I LOVE cruising???)

8. Go to Paris and be brave enough to go up the Eiffel Tower

9. See Italy

10. Go country line dancing

11. Go to Boston

12. See the Florida Keys

13. Go snowtubing

14 .Visit Grounds For Sculpture

15. Tour the Duke Estate grounds

16. Participate in a Melanoma walk (and maybe a run someday!)

17. Swim with dolphins

18. See the Grand Canyon

19. See the Mets play at their new stadium

20. Ice skate

21. Ride a horse

22. Do a scrapbook weekend with friends! (and catch up on scrapping!)

23. walk 365 miles in a year

24. Watch a sunrise on the beach with Dave and some coffee

25. Go to Williamsburg and while in VA, meet the people at the shelter who helped save Nemo and the shelters we have pulled dogs from to come to NJ.

26. See the Macy's Thanksgiving Parade

Sandy's Warriors-The Melanoma Walk (9/26/12)

First of all, a huge shout out the the friends and family who helped us raise $161 for Melanoma research!!!!

I also got to cross off part of a bucket list item!!!

 I love to walk. It helps me relax, refocus and recharge. I have had several walking buddies during my journey-my friend Teri, my Mom, my Mother-in-law, my sister and her new baby, Dave....it's been great to have company on a walk. On Sunday, I had lots of company for my walk!

It was a beautiful, perfect day to walk the 1 Mile Fun Walk. The day before Dave and I had gone to Seaside and walked about 3 miles so I didn't want to push myself. We also just wanted to find out about the walk and see what it was like.

I am so incredibly happy that Jaci who I teach with and her boyfriend Zach came to support us and to do the 5K run! I was so proud of them at the finish line and was so happy they gave up a Sunday morning to join us for this important cause.

There were quite a few teams at the walk. I'd eventually like to see a huge crowd but I'm sure it will get there-it has only been around for 6 years. I'd also like to have a HUGE team next year.

I have to admit, and this may sound really dumb, but I was not prepared for so many teams to be walking in memory of someone who died from Melanoma. I know, I know, that's why many people do these things but it hit you in the face with the team shirts in memory of someone. I barely held it together during the walk seeing so many of those shirts. I started crying after it was all done as I was processing this information. Thankfully Dave and Jaci helped me to cheer up and Jaci did point out that the reason why we are doing this is to stop so many people from dying.

I decided then and there that next year I was going to do it again, and I'm going to do the 5K part even if I have to walk some if it. I want a ton of people there on my team to support the living.....to give people hope........to celebrate life. Please consider joining Sandy's Warriors next year to bring hope to those dealing with this nasty cancer. I want an army of people wearing Sandy's Warriors shirts crossing that finish line!!!

Taking One For The Team-Pituitary Gland (11/25/12)

September was great.....feeling good, got in two treatments. Then, in October, I started falling apart. I had blazing headaches which everyone was attributing to the weather changes or a sinus issue. This lasted three weeks and through a few doctor visits. No one had any ideas except to take stuff for the sinus issues. What was actually happening? My Pituitary Gland was swelling, putting pressure on my sinus cavity.

At the end of October, I then started with a 'stomach virus.' (actually part two of pituitary shutdown) Sick all of the time, took off two days from work. It came from out of nowhere. Ironically, it started a few hours after leaving the doctor's office for another visit about the headaches. The headaches left when the virus started. Of course, I conveniently get this through the hurricane so reaching my primary doctor was impossible-his office was without power and you couldn't get near it. Cancer Institute phones were down-you couldn't get anyone there, either. I'm trying to tough it out but realize it is a losing battle and I need help.

A few days after the hurricane I tell Dave it's time to just go to the emergency room. Electrolytes are all over the place-sodium, potassium, magnesium all dangerously low and I get IV after IV and loads of pills. They send me home. We go to my parent's house because we have no power. I'm sleeping 23 hours a day when not running to the bathroom. I'm not getting any better.

We had a vacation planned for the scheduled week off from school. Had to cancel, I was still sick. Power comes back on at home so we go back home. I am unable to function. So, back to the ER. The doctor is really concerned about my levels and is afraid I'll have seizures so they admit me. Supposedly they contacted my doctor but she knew nothing about me being in the hospital until a few days after I got out and phone services had been restored. I spend three days in the hospital and finally feel better. They send me home.

I see my doctor and blood work is crashing again. She calls my lifesaver, her endocrinologist friend. She's seen this before in  only a very few patients. At this point, I look and feel like crap and can barely keep my emotions in check. I actually started crying out of frustration at the photocopier at work one morning and they offered for me to take a few weeks off to get back on track again.

Two days later I meet with the endocrinologist. She is young and wonderful. I tell her all about the last month, crying a little as I go, feeling like I will never be normal again. After going through my long list of issues, she gently put her hand on my knee and tells me she can fix all of this with two medications. I want to cry with relief. I think I did. She tells me she can almost guarantee what is wrong but I need a test first. No problem. I get a shot to stimulate a response in my body which will be measured by blood work in exactly an hour. Body does not respond. She is correct in her diagnosis.

So, what does all of this mean? The treatment drug has caused my pituitary gland to become inflamed. It is never going to heal, based on the tiny amount of people who have had this problem. It is about 1-3% of the people who get this treatment who have this response. This is why no one was looking for it-it almost never happens. Thankfully my endocrinologist has seen a few cases and knew what was happening.  As a result, I will have to take a thyroid drug for life. I also have to take hydrocortisone for life as well. My adrenal glands no longer get messages to create cortisol. Thyroid is fine but no longer gets messages to create the needed stuff. I say it's like your car radio. If there is an electrical short, no matter how high you make the volume or how much you try to change the station, you get nothing.

Get a second opinion you may say? Well, a team of doctors in New Brunswick discussed my case. They decided I may as well continue treatment because the gland is permanently damaged. It will show up inflamed on MRI's and be called 'cancer' but we know the truth. It was discussed with the clinical trial people. My oncologist called and faxed with the head of treatment at Sloane Kettering and he has seen this issue as well and agreed with the course of treatment. My endocrinologist has done research on this issue and has helped people live full lives who were far worse than I was at the time.

How am I now? Well, the headaches are gone (it was pressure from the swelling gland) and blood work is better. I feel a lot better and have a ton of energy. I have to be careful because I can no longer create an adrenaline rush so I need to try to live as even as I can. I stay up later and sleep better. No more crying jags at the copier. I've lost the water I was retaining and the scale  is moving in the right direction. I need to play around with the pills-more if I'm sick and such, but I can do this. I finally feel like it is the end of November-I really lost 6 weeks of life and felt like it was still early October but the Macy's Parade and Thanksgiving helped to center me again. I'm living life and ready to do things again within reasonable limits.

Regrets? Well, to be honest, I did stop a few times and say "Oh my gosh, what have I done?" I willingly went into treatment. I signed off on the potential side effects. I knew the risks. It still doesn't make it easier knowing I have caused major permanent damage to my body. It is hard to accept at times. I've cried about it, yelled in an empty house but ultimately, I've learned to accept it. The alternative is far worse. Quit the trial? Open the door for Melanoma to come back? No way. That scares me far worse than the side effects.

Reflections on the Year from........ (12/28/12)

My friend Fran told me this would be the 'Year from Hell." She was soooo correct. My other friend Carol had declared that 2012 would be the year of fun. Not so much for either of us. She had a New Year's Day party and almost no one came-stomach virus. Should have been a big indicator of the year ahead but we soldiered on!!!

I hardly remember last January and February except that I agreed to teach AP World History for this school year.

I remember foster dogs Chili and Nadia. That was as far as we got with foster dogs. I really miss fostering-it's great for my dogs-someone new to play with and snuggle with and my dogs are amazing when it comes to teaching house rules and manners to a dog who needs some direction. I also love when it's a great match with the adoptive person-it's great to see someone so excited to get a dog that was thrown away by someone else to possibly die.

I do remember my first visit to the dermatologist that got this whole ball rolling.

So, the pros about this year? I got to see the Macy's parade live. I rode on the subway for the first time. I stopped putting up with crap and will call people out on it.  I opened up more. I let people into my life. I cried in front of people. I finally figured out that it's my pituitary, NOT me that was responsible for a host of issues I've had my whole life. I found out I'm a lot stronger than I thought and I can handle more medical crap than I ever thought. I had never had surgery other than wisdom teeth out and I went through the gamut of medical crap this year. I faced down a drain and an opening in my body that Dave has to stuff with gauze for 2 weeks. Dave and I got a lot closer and I learned to lean on him more. I learned to accept help from others and rarely said no to offers of help. I relied on my new attitude of being as positive as I can be given the circumstances. I found out my body and mind are stubborn and didn't quit and let me die. I guess the biggest pro is being alive to celebrate the end of this calendar year and welcome in a new one.

What sucked? Well, having stage 3A melanoma but I have said it was the best thing to happen to me. I needed to be hit in the head really hard to change my life. This year I missed out on a lot of things....I really couldn't hold my niece Abby until Chirstmas due to weight holding and lifting restrictions or recent surgeries. We had to cancel our vacation to Amish Country. I missed a bowling night that I was looking forward to attending. We had to cancel out on a lot of plans but I pushed and was stubborn to make a lot of things as well. I missed a lot of school....I love my job and everyone is so supportive that I look forward to being there. I miss being healthy but I know I'll get there again and this will all be behind me at some point. Maybe not next year but soon......

I wish you all a healthy (especially that part) and happy new year. If you haven't made a skin check appointment yet, please do so...now.....don't wait.....