Saturday, December 31, 2011

Somewhere in the middle..


A week and a half after my second surgery I returned to Dr. Glinda's office to see if I was able to get my drainage tubes removed and to find out the results of the lymph node dissection. Well as soon as I saw her face I new some more bad news was about to come..One of the lymph nodes that was removed out of 22 was also cancerous, so being two in total, meant I was stage IIIb.. not stage A as we had hoped(meaning that dreaded survival rate stats just went down). However, I guess I have to at least be thankful that it wasn't worse but "in the middle." And those awful drainage tubes were removed so I was happy about that : ) She then told me that the clinical study that I was considering doing was about to close and I needed to sign the papers right now(later I found out that she rushed these papers over just in time and I was the last person in the US to get accepted into this trial). She also told me just because I signed the paperwork I was able to withdraw at anytime. I was scheduled to meet with my treatment Oncologist in two weeks to review all the details of the clinical trial and the drug I "might" be receiving. Since this drug has not yet been approved by the FDA for stage III patients only stage IV, I may end up getting the placebo(salt water).

On June 9th I met my fabulous Oncology team and finally some positivity is in the air!! As soon as I walked in the Sloan office buildings I was treated with the uttermost kindness(I really think everyone one from the receptionist on goes through kindness training or something). First I met the Dr.'s assistant AK who brought me into the room and made me feel very comfortable, right away we clicked and became instant friends. Next Dr. Magical came in and my mom just bombarded her with a million and one questions about the study, side effects, and anything else that she could think of that was remotely cancer related!! Well as soon as Dr. Magical opened her mouth I could tell she was the most caring and loving doctor and that I would be in good hands. She didn't look at me like all the rest(that poor you face)she looked at me like I understand your pain but you are in the right place and making all the right decisions. She explained every single aspect of the treatment.. I would get injections every three weeks(intensive treatment) and after the 4th injection I would get it every three months for 3 years(maintenance treatment). I would need to give up to 16 vitals of blood the morning before each treatment along with blood tests every month and I would need to get CT scans every 2 1/2 months. Most common side effects would be diarrhea which if not caught early could lead to colon disease, itchy skin and rashes, and fatigue.. other more severe side effects can occur but are more rare. Now I know it is kind of crazy to go through ALL of this for 3 years and just receive salt water but if people like myself didn't choice to take part in these studies we would be even more far off to finding a cure. I have in the course of these 9months been lucky to friend many many melanoma warriors who keep fighting the fight but I have also unfortunately seen too many of my warriors get their angel wings. So salt water or so called "wonder drug" I was more than willingly to take my chances.
Then in came Nurse Motherly who was in charge of the trial and whom I would be in constant contact with and call immediately if any I had any problems, questions, or side effects. And FINALLY walks in Dr. Wonder who found a way to make even my mother calmer!! He was the most positive, reassuring, and extremely thorough Doctor we had talked to so far. He told my mom she needs to STOP researching and looking online and simply leave the worrying to him!! His exact quote was to refer to him as the old Amtrak slogan.. "LEAVE THE DRIVING TO US." And from that moment on we did exactly that.

Next blog more scans and my first trip to the bloodsuckers and the chemo suite...

Thursday, December 29, 2011

I begin to see the light!


Ok so right after my surgeon tells me the plan..have another surgery to remove all my lymph nodes under my left arm and do Interferon treatments for a year.. I think ok this is what I have to do, no thinking just doing. I needed to just get this cancer out of me and move on. He scheduled the PET scan that Monday and the surgery for the next Friday. The day after the PET scan(which are horrid), I get a call from the Dr. that the organs look clear just a few very small nodules were found on lungs and will need to rescan in 3months. I take this as AMAZING news because frankly I needed to hear something semi-positive at this point. 

Thankfully my mom and my best friend Jen were not as satisfied as me with everything going on and did NOT agree with my,"no thinking just doing attitude." Jen, calling in all her favors and contacts until they just couldn't stand to hear her anymore, found the best Dr.'s at Memorial Sloan Kettering and without me even knowing had a Surgeon call my mom and they scheduled an appt for that same day! Again thank you, thank you, thank you mom and Jen! But at the time I think I responded something more like, "I don't want to see another bleeeping doctor and I am not going to leave work early AGAIN! (in my defense it was my last week of work and I had a LOT to do).

BUT somewhere deep inside I knew they were right and that day in a random office, I met, who I will call "Dr. Gilda the Good Witch," the most amazing Doctor I had yet to meet... (I must note I am stealing this wonderful name from my favorite melanoma warrior, Chelsea, because honestly there is just no better way to describe her). This appointment was probably the best but scariest appointment I had so far because while Dr. Gilda was great she told it like it is, no beating around the bush with her. She gave me the statistics and the FACTS, while reminding me that these facts are general and that I could be different, she said they are not taking all "Julie's" into account but every single person with Melanoma... She told me that I had some options, now this was the first time I was told that I had any option other than surgery and Interferon. She said we can either do the surgery and remove all lymph nodes, which is a major surgery with a long recovery time or just "watch and wait." She said that Sloan doesn't even do Interferon because it only prolongs the time of possibly reoccurrence for about 15% of patients on it. And she then told me about a clinical study that my new treatment Oncologist was heading called Ipi/placebo(yup Jen and my mom scheduled me for a new treatment oncologist also without me knowing..Ummm THANK YOU). Now once I saw Dr. Glinda I knew she would be my new surgeon because for the first time I felt like someone was being honest with me about this nasty disease and I felt like she truly cared.. ALSO I knew there would be no "watching and waiting" for me, if there was a chance that there was cancer in the other lymph nodes the Cancer was coming OUT. She agreed and stated that without knowing how many lymph nodes were infected we wouldn't be able to properly stage the cancer(I didn't even know there was any other stages). I learned if the cancer did not spread to the other nodes I would be stage IIIa, if it spread to one other node its stage IIIb, or if it spread to more than one it is stage IIIc. And your survival rate can be from around 70-30 percent in 5 years depending on your stage...This is were it hit me and hit me hard..survival rate would become my new hated word! I thought all this statistic crap was based on just that "survival" as in your somewhat cured(ok ok I know there is NO cure for Cancer but you know what I mean). I didn't know that it meant a 50percent chance of ONLY surviving for 5 years..that just (pardon my french) sucks big time! This is when I finally came out of my cloud of denial, and realized.. Wow Julie wake up.. this is really happening and this is your life we are talking about! AND then I thought hell yes I want second opinions or thirds and fourths and hell yes I want to try this clinical study, and HELL YES I want to go to Sloan Kettering one of the best cancer hospitals in the world and Oh My God shit.. I have friggin CANCER!! Needless to say I made Dr. Glinda check her schedule right then and there and fit me in for surgery ASAP. I was scheduled a few days later Thursday, May 20th, 2011. 

Thursday morning I went in for surgery and came out about 3 hours later. This time I knew better, when I woke up in recovery and the nurses asked me what my pain level was, I was like pain what pain I feel fine, NO pain meds thank you(this is all said through clinched teeth because yes I was in pain and ALOT of it). I was afraid from my last experience but I guess I didn't fool anyone because they made me take the meds, though assured me they would not give me anymore than I could handle(and they didn't). PLUS within 5mins my mom, dad, Joe, and Dr. Glinda were at my side!! They only let them stay a few minutes but it was so great to see them right after I woke up(not 4hours later like my last surgery). 
About 2hours later they put me into a room and that's where the drama began because they put me in the wrong room. Right away I knew there was a mistake because I heard the nurse call my mom and tell them what room I would be in and I KNEW my mom would have been there waiting. Finally after getting the attention of a nurse and borrowing a cell phone from the visitor of the patient in the next bed I was able to sort it all out, but with all the moving around my stomach was not too happy and I got VERY sick. My new room had my smiling family waiting but it also had a crazy old lady in the bed next to me who would get up and stare and me and tell me im too young to have Cancer, why do I have Cancer, what a shame, etc. and this occurred for two days!!!! By the following night I told my mom we are leaving I can't not stay here with that lady anymore so we got a wheelchair, told the nurses to sign us out and home we went! (I must add this hospital stay did suck because of crazy lady but I had the best nurses and the HOTTEST resident doctors checking up on me.. I felt like I was on Grey's Anatomy, they were that hot.)

This blog post is dedicated to Chelsea, during my first appt with Dr. Glinda she gave me Chelsea's name, email, and blog address(she asked her first of course). She said Chelsea was around my age, even younger, and going through the exact same thing. She told me Chelsea would be a great person to talk to and boy was she right! Thank you Chels for being there for me through everything you are my melo mole mate.. and my inspiration!! Love you : )

Next post.. my follow up appt. with Dr. Glinda and my first appt. with my new treatment Oncology team!!

Tuesday, December 27, 2011

The terrible, horrible, no good, very bad MONTH!

Month Two
Ok so at this point I probably have never been more nervous in my life..(later on I will realize that I experience this type of nervousness every two and a half months for organ scans)..I remember sitting in the waiting room and praying silently please let it be good news, not even knowing how bad the news could actually be!! My friend Cristina stayed late that day just to see me but looking back I know she was there to help me cope with the news I was about to hear.
We were finally called in and first the Dr. examined my back and under arm stitches for infection, then he takes out his file and this part is a little fuzzy..because I think my mind just shut down. I could hear the pain in his kind voice saying the Cancer is aggressive and has already spread to my lymph nodes... I hear stage III Metastatic Melanoma or worse depending on if it spread to other vital organs...another surgery ASAP, full lymph node dissection, long recovery...Chemotherapy and treatment options(slim to none)...Interferon(type of chemo) only option available...possibly no expectancy moms crying voice...Joe's terrified face and me just staring at the wall hearing but not feeling.. tears are trickling but I am just numb.. I am in a far off place and I don't want to come back to the reality that was happening in that small little room. The doctor could not even stand to see the pain that was filling our hearts and immediately sent in for Cristina(my angel). She hugged me tight and calmly explained to us what our next step would be. Full body PET scan was scheduled right away and a meeting with a treatment Oncologist to discuss Interferon.
Once we were outside we all just started crying, so much that my mom couldn't even see to drive home. But we got it together and came back to my apt and my mom being my mom broke out the peach Champagne and we toasted not to the good news that we had expected to hear but to fighting this fight and beating the crap out of Cancer!!

Ok so now once the news had "sort of" sunk in I came across another extremely tough part about having the Big C.. how do you tell people. Now remember before this point I thought it was only stage1 and I would have a minor surgery and that would be the end of I had decided it was easier to just keep this whole cancer stuff to myself and my immediate family. But now that was pretty much impossible.
First I started with my job, I had already told my principal and two of my very close and amazing coworkers about the first ordeal. But now I have to not only tell my principal that I would not be returning to work until next Sept. but I had to tell my kids. How do you explain something like this to 8yr olds.. well you don't! You tell them in your bravest teacher voice that you will be having surgery on your arm(not a lie) and that you will be fine but you will not be able to return to school until next year simple right? I could have never expected the enormous list of question these kids had..those little minds are smarter and more aware then you think but their hugs ooh those loving hugs thats what finally put a smile on my face. Next was to tell the rest of my co-workers and the children's parents. My principal who I have to say was and still is extremely supportive decided to send out a letter to the teachers and parents explaining my whole situation so I wouldn't have to tell everyone myself. That worked out great you couldn't even imagine the outpouring of kindness and support I received from EVERYONE at my school! No questions, no strange stares.. just heartfelt cards and letters of pray and well wishes. The parents of my class also later got together and all donated money to help with my medical expenses, now these are in no way wealthy people, so this was truly the nicest gift of thoughtfulness I could have received. AND my partner teacher stepped up to the plate like no other, I don't know what I would have done without her help. She truly did everything for me at school and left me with only myself to worry about.. Jody I love you to pieces!
Next came my best friends and what friends they turned out to be!! First I told my friend Jen and I am thankful to this day that I did. Now if anyone knows Jen you know the first thing she did was make a! Was I at the best Dr., did I get second options, what was she going to do to help(mind you she was living in London!!) I was still numb and couldn't yet talk about any of this so I referred her to my "manager," MY AMAZING MOM! And together they took control and made sure I had to best of the best(later on that). Jen I am honestly where I am today because of you and I cannot thank you enough. I immediately had Jen tell my other best friend Tracy because I just couldn't say the words to her out loud. Tracy knowing me more than anyone else was absolutely wonderful, she let me be and worked her magic on the sidelines helping Jen and my mom. Next was Tara.. of course she got the news via a BBM lol, and she said the words I needed to hear not.. oh I am so sorry to hear(FYI that is not a good response) but she said wow that SUCKS lets go get a beer and decide how we are going to kick cancer in the you know what! Then was my best friend Diana whom I hadn't spoken to in awhile but despite that she got in her car and drove over an hour to be at my doorstep the second she heard. She was there to keep my spirits high and spend some quality time with me, making sure I was never alone in any of this!

SO I would like to take this time to thank all of my amazing family and friends who knew the right things to do and say when I couldn't find the strength yet in me to do it for myself. A special thanks to my sister, my parents, and my now fiance Joe.. without your unconditional love at the hardest time in my life I would still be that frighten numb shell of a girl stuck in that small cold room!! Jessica please never stop holding my pinky ; ) I LOVE YOU ALL!

Next blog will continue this long and hardest second month of my journey.. my meeting with Dr. Gilda the good witch!!

Where do I even begin?

I never thought I would be able to write a blog but with the inspiration of my favorite bloggers Chelsea and Heather and my deep hope that getting my story out there will help myself and bring awareness to others here it goes.. But now the question is where do I even begin.. I guess for those new to my story I need to rewind and give a recap of the last 9 months. 

It all started with an innocent trip to the dermatologist in the end of March 2011.. I had a "beauty mark" on my back that was dark in color and since I had other moles removed before I thought I would just go and get this one off as well. The dermatologist said she thought it was nothing but would remove it anyway and that I was to come back in a week for my results. Not wanting to take another day off of work I asked if I can come quickly on my lunch break the following week. Looking back big mistake, it's NEVER easy to have to hear that dreaded C word but to hear it by yourself on your lunch break is a whole other story. However, I was again told not to worry that it was only stage 1 and I was just going to need surgery to get it removed. No big deal right?? WRONG!!

I was sent in to see an Oncology surgeon that same day and at this point I can honestly say I was just in a state of tears just shock! I remember calling work and telling my boss that I wasn't coming back from lunch, then my mom who was in Florida at the time in which she replied you don't have "real"cancer its just a mole that needs to be removed.. which truthfully just pissed me off(sorry mom I know you were trying to help).. then to my boyfriend of only 4 months to see if he would come with me quick to this Dr. appt. I had in which he replied, "I'm not sure I am out car shopping with my mom," my reply.. umm ok dont worry about it but umm I think I have! He was at my apt within 10 mins.(yup thats why im marrying him)! 
An hour later I was in an Oncologist office and I could remember filling out the forms and not being able to write the word Cancer... I mean this must all be a mistake or a bad dream, people my age don't get Cancer?... I went in to see the Dr by myself another big mistake because I wasn't in any state to ask questions or even talk much for that matter(luckily Cristina, a friend from high school, just happen to work at this Oncology office and she came out and explained everything she could about the procedure.. thank you Cristina you will never know how much your kindness and compassion truly meant). But honestly at this point I was just a scared girl who needed her mommy!!! Though, I wasn't going to tell "mommy" that.. I believe I tried to convince her not to even come home for the surgery because according to the Oncologist I would be in and out and back at work on Monday! (Surgery was Friday mind you). BUT momma knows best and Friday morning with 5 pages of questions for the Dr. she was there holding my hand... and thank God for her knowing me more than I know myself!!! 

BECAUSE the surgery was nothing and I mean nothing like anything that I was prepared for, before the surgery started I was told I needed a Lymph Scan, in which they inject radioactive fluid around the melanoma site(this hurt like a few double hockey sticks!!) Then you go in a room to get scanned to see if any of the lymph nodes glowed, and my left under arm was glowing like crazy!! After they told me that I would have to have my sentinel lymph node removed and biopsied during the surgery. Ok so now I'm really nervous but the Dr. again told us he is almost positive that it is nothing to be concerned with. 

After the surgery I woke up in extreme pain and was very very nauseous and I just wanted to see my mom but the nurses just gave me more pain meds(which I did not want!) and told me to try and sleep that I had to wait, but I just kept getting more and more sick. It was a horrible experience because everywhere around me family members were coming in to see the other patients and as much as I begged and cried..yes cried.. they would not bring in my family. Finally after a few hours they told me if I can walk to the chair across the room they would let me see my mom. I was so sick and out of it but at this point I would do anything to see her so I did it. Come to find out the whole time they were telling my mom and Joe in the waiting room that I was still sleeping.. Until my mom finally got up and said if you don't let me in there NOW I will walk in myself. Later we found out that they gave me too much Morphine and wanted it to wear off before my mom saw me!!! Now my mom and Joe come in and the nurse tells them that I have a drainage tube in my back because they had to go deeper than planned and I would probably be on bed rest for a week. WHAT!! I was suppose to be in work on Monday and back to normal?? The recovery was hard and painful but the wait for the lymph node test to come back was by far the worst part.

Two weeks later my mom, Joe and I are back at the Oncology office to hear news that even my worst fears couldn't have braced me to hear ... to be continued on next blog post!!