If you haven't noticed the theme of this week.. it is anniversaries. This week, February 24-March 4, is what I refer to as my "hell week." I know I shouldn't put energy into it all but this week is a bad week for me historically. It all started in 2005 (dog died, car accident and dog attack. Started to sound like a country song) and seems to continue to this day. Regardless, I try to lay low this week just in case.
February 27 is my original "cancer free" birthday, it is the date of my last surgery for my first round of cancer diagnosis. I almost made it to my 6th birthday, but then that changed last year obviously. It was sad to have the day come and go and no longer hold such importance. I don't have a new cancer free date just yet as I am still actively fighting this f'r.
I will be happy to be done with this week soon and hopefully not have any more major things to add to the plate. I want to break the cycle!
It has been interesting these past few weeks. Since I am obviously responding well to the treatments, people are asking the question of "so are you cured?" "can it go away?!" So no I am not cured - I am definitely better than I have been but there is still cancer and tumors in my body that we are watching closely. And yes it can go away or have no evidence of disease (NED) but I will always still have had stage 3c cancer. My stage doesn't go away, it just gets re-staged after you have NED and it recurs. They don't use the words "cured", they say in remission or NED or clear; all words I hope to hear soon.
I have been asked a lot lately how I am feeling as well. I am still doing well - no real side effects to report. I have now been on this new med cycle for 29 days and still doing well. I have some minor skin irritations and exhaustion but that is all. Since I have been doing so well I am starting to consider going back to work - wherever that may be - to help pass some time and get back on my feet. We shall see!
Sunday, February 28, 2016
Wednesday, February 24, 2016
Scanxiety with a side of good news!
Today is a big day for a couple reasons. One it is February 24 (see previous post) and two I got my newest scan results and had a doctor visit. Leading up to this appointment I have felt very good and have been just waiting to see if side effects are going to hit me from these new meds (Zelboraf and Cotellic). It has been a waiting game for sure, but so far there hasn't really been anything worth noting.
I had an MRI and a CT scan yesterday, as you know they are not my favorite. I generally don't like them because they make me sick but now there is the scanxiety associated with scans and so they just aren't my favorite. I shouldn't have been as nervous for these scans since I can visually and physically see that the medicine is working wonders but that doesn't mean my mind doesn't wander. I still have the freshness of losing my dear friend to this same disease and it just makes me nervous. Also, they say that if one tumor has a BRaf mutation then all of them do (that's what the meds inhibit is the growth of this mutation) but what if a new one popped up and happened to not have the mutation, then what?! The what ifs tend to rule your mind before you know it. I was able to calm them to a degree, but the thoughts still lingered.
I got to my appointment and went to go get labs done. I am a terrible poke and today was no exception. After 4 failed pokes we finally got a vein to give us enough blood for 2 vials and I was on my way, just a bit bandaged and bruised. In the hallway I ran into my surgical oncologist (I am no longer seeing him since being off the trial and not having any surgery related things) and he gave me a giant hug and said how incredible my scans were. I hadn't gotten the official report at this time so I was so happy to hear and he just said they looked great.
Once my general oncologist came in he was beaming with content and said that my scans should go up in a hall of fame for "most improved" and a sort of show and tell. They pulled them up and it was pretty great to see. We did a side by side comparison of the scans from 12/22/15 and yesterdays 2/23/16 and it is really and truly amazing.
For once in the past year I was receiving good and improving results from my scans. There is no new disease and just remnants of tumor in comparison to the previous scans. Brain, lungs, all other organs clear. It was crazy to look at the size of the tumors in the scan and how large they truly got, and how small they are now in comparison.
I had an MRI and a CT scan yesterday, as you know they are not my favorite. I generally don't like them because they make me sick but now there is the scanxiety associated with scans and so they just aren't my favorite. I shouldn't have been as nervous for these scans since I can visually and physically see that the medicine is working wonders but that doesn't mean my mind doesn't wander. I still have the freshness of losing my dear friend to this same disease and it just makes me nervous. Also, they say that if one tumor has a BRaf mutation then all of them do (that's what the meds inhibit is the growth of this mutation) but what if a new one popped up and happened to not have the mutation, then what?! The what ifs tend to rule your mind before you know it. I was able to calm them to a degree, but the thoughts still lingered.
I got to my appointment and went to go get labs done. I am a terrible poke and today was no exception. After 4 failed pokes we finally got a vein to give us enough blood for 2 vials and I was on my way, just a bit bandaged and bruised. In the hallway I ran into my surgical oncologist (I am no longer seeing him since being off the trial and not having any surgery related things) and he gave me a giant hug and said how incredible my scans were. I hadn't gotten the official report at this time so I was so happy to hear and he just said they looked great.
Once my general oncologist came in he was beaming with content and said that my scans should go up in a hall of fame for "most improved" and a sort of show and tell. They pulled them up and it was pretty great to see. We did a side by side comparison of the scans from 12/22/15 and yesterdays 2/23/16 and it is really and truly amazing.
 |
| Left side of screen: 12/22/15 Right side of screen: 2/23/16 We are looking at the GIANT tumor (left pic neck) and then the small remnants that remain (right pic neck) |
We (obviously) are staying on this course of treatment and will reevaluate in one month. There is still chance of adverse side effects as there is with all drugs, and for now we will just keep up with the tumor shrinking hopefully. I know this isn't an end game as far as treatment, but for now it is nice to have the positive scan results and head into the next month of this treatment. I don't have another doctor appointment for a month and I am feeling good and actually feel good enough to start making some plans for things in my life, something I haven't been able to readily do for literally over a year. One step at a time!
Yay for a good scan day!
February 24
February 24th has some history to it. It has been the day of my surgeries, two of them. First was my first lymph node removal as well as my MOHS surgery on my primary melanoma 7 years ago. And then last year for my radical neck dissection where 37 lymph nodes were removed, 7 of which were positive for melanoma as well as the surrounding tissue. When they took off the bandage last year and I saw my new neck for the first time I was in complete and utter shock. The scar was so much bigger and crazier than I had prepared myself for. I had a drain as well which was interesting in its own right. I was sad that I no longer had a "normal" neck and that I will forever have this as a sign of what has happened to me. There are still moments when I am shocked at what has happened to me overall, but then I realize just how amazing my body is to have endured what it has endured and to have healed as well as it has. My new neck gets looks and I get asked questions often about it, but I am owning my story now - something I wasn't sure would happen when I first saw it a year ago. Scars show where we have been and that what we were faced with didn't conquer us. Some scars are bigger than others but all tell a story. I have thought I needed a big, elaborate and made up story to go along with my scar. Maybe that I got attacked by platypus' or some rogue stabbing but I am realizing my story is plenty crazy in its own right. I have realized that me telling my story behind my scar helps to bring awareness to melanoma and begin a conversation that most people are confused about - it isn't "just" skin cancer and it isn't just as easy as removing a mole (but I do know that this is the case for some, just not all.)
Looking back on peoples calls, texts, posts and emails they sent me a year ago today really makes me remember how many people are with me in this crazy fight. They were behind me 100% then and they are behind me 100% now. I have already beat some statistics by still fighting this battle a year in, I plan to beat the statistics all the way to the end!
I am excited to tell my scar stories for years to come.
Looking back on peoples calls, texts, posts and emails they sent me a year ago today really makes me remember how many people are with me in this crazy fight. They were behind me 100% then and they are behind me 100% now. I have already beat some statistics by still fighting this battle a year in, I plan to beat the statistics all the way to the end!
I am excited to tell my scar stories for years to come.
Side by side scar comparison
Left: 2/24/15
Right: 2/24/16
2/24/16
Monday, February 22, 2016
First Outdoor Market Day
Yesterday was farmers market day. For those of you who don't know my full past, my last job was doing vendor management for one of the local farmers markets in town. I would make sure vendors did what they were supposed to and collect payments and just basically make the event/day run smoothly. I have worked a bit here and there since my cancer returned, but I always try and go to the market if I can. I also have FOMO (fear of missing out) if I don't go.. so there is that. Regardless, yesterday was the market and I went to go support my work buddies and enjoy the day. Since the weather has been kind of nice, they decided to have it outside. Knowing this, I put sunscreen on as well as I had a long sleeve cardigan/sweater on. I have been on the BRaf inhibitors since January 1st, technically, and one of the side effects is sensitivity to the sun so I was prepared. Or so I thought. It was overcast for most of the time I was there and then the sun came out towards the end. I could feel that I was getting some sun so I would duck into the booths and shade every chance I got. By the end I felt my face and top of my head burning - like a chemical peel almost. I began covering my head and face with my cardigan like I was hiding from paparazzi or something. It was pretty crazy. By the time I left I knew I was burned, just didn't realize just how bad it was. My lips felt like I was scalding them when I put on some vaseline and the top of my head (where a bald spot would be) was stinging and itching. By the end of the night my chest and neck were becoming more and more red and began itching and burning, almost feeling raw. I took some benadryl to sleep and when I woke up the true extent of the burn was there. I got it good! My chest is soo red and one side of my neck as well. My nose and some of my cheeks are rosey and my lips have already peeled once. To really make it crazy, my hands are burned. My hands!! Just crazy. I knew that it made you more sensitive, but my hell! It is like I have brand new baby skin!! I really thought I was prepared, but obviously not. I will say I did not put sunscreen on my chest, so that is my fault. Now I will be extra prepared and have put my sunscreen in my bag so I am ready. I am hoping this pain and stinging subsides soon, but I am almost positive I will peel. Nothing like a skin cancer patient getting severely burned .. the irony. For now it is ibuprofen and aloe gel as well as extra sunscreen.
Beginning of the day
You can barely see my nose and neck in this.. as well as my hands
Who burns their hands?
Mid day.. heat is radiating off of this!
Thursday, February 18, 2016
Random Update
I thought I would just update on my life in general as I haven't really done much on my health as it has been pretty stable, with not much to report - which is a good thing.
As you know I started my new meds on February 1st. I have now been on them for 18 days and things are going good. I was off meds for 10 days before these and in those 10 days my tumors all began to creep back. I was happy to see that after 3 days back on the meds they began to shrink once again. As of right now they are practically gone, it is pretty incredible.
For side effects I got a rash that started on the same day as on the last cycle, day 10. I started to take prednisone immediately and it seems to have stopped the rash in its tracks. I have still been fighting the stomach bug that started on Jan. 30, which it is basically gone but is still lingering a bit. I think my body just isn't as equipt to fight as hard so things linger. Luckily I am not as sick as I was that first week. My bad side effects started on day 20/21 with the last meds so I am just kind of waiting to see if these will be the same or if I will continue on without any more issues. We shall see!
As for the rest of the chaos in my life, it is slowing down. My mom was in the hospital and underwent an angioplasty and a double stint placement to open a 95% blocked artery. She is doing great now, feels like a new person she says. My dad has also been in the hospital recently. He spent 5 days inpatient for what we believe is a severe staph infection in his leg. He is now home on some very strong IV antibiotics and is slowly getting better. No idea how he got it, but happy to see that things are getting better and not worse. Now that all things are starting to slow down I am able to get some things in order and work on some things at home. February and early March are historically bad for me so I just have to truck my way through them... One day I will break this curse, but it isn't looking like this is my year. I am just hoping there aren't any big things like the last two years. Life can be boring for me, I wouldn't complain.
I have scans next week so we will see what they show and then have a continuing treatment plan.
As you know I started my new meds on February 1st. I have now been on them for 18 days and things are going good. I was off meds for 10 days before these and in those 10 days my tumors all began to creep back. I was happy to see that after 3 days back on the meds they began to shrink once again. As of right now they are practically gone, it is pretty incredible.
For side effects I got a rash that started on the same day as on the last cycle, day 10. I started to take prednisone immediately and it seems to have stopped the rash in its tracks. I have still been fighting the stomach bug that started on Jan. 30, which it is basically gone but is still lingering a bit. I think my body just isn't as equipt to fight as hard so things linger. Luckily I am not as sick as I was that first week. My bad side effects started on day 20/21 with the last meds so I am just kind of waiting to see if these will be the same or if I will continue on without any more issues. We shall see!
As for the rest of the chaos in my life, it is slowing down. My mom was in the hospital and underwent an angioplasty and a double stint placement to open a 95% blocked artery. She is doing great now, feels like a new person she says. My dad has also been in the hospital recently. He spent 5 days inpatient for what we believe is a severe staph infection in his leg. He is now home on some very strong IV antibiotics and is slowly getting better. No idea how he got it, but happy to see that things are getting better and not worse. Now that all things are starting to slow down I am able to get some things in order and work on some things at home. February and early March are historically bad for me so I just have to truck my way through them... One day I will break this curse, but it isn't looking like this is my year. I am just hoping there aren't any big things like the last two years. Life can be boring for me, I wouldn't complain.
I have scans next week so we will see what they show and then have a continuing treatment plan.
Here are my recent neck/tumor pictures. You'd never really know much was there at this point.
Monday, February 15, 2016
Valentines Day
I truly love Valentines day.
Many would probably think I wouldn't care for it as I have been single for more of them than not - but that isn't the case. I have learned to make it my own and realize that I am surrounded by many people who love me. It doesn't have to be a lover that you are in love with - you can be in love with your friends and family. It is just a day of showing love.
This year I celebrated Galentines Day, a day of celebrating all the girls in your life. I dropped off some treats to friends and had brunch with two lovely ladies. Many people thought I was just misspelling Valentines and celebrating early (as it is celebrated on February 13th) but it was intentional.
On actual Valentines day I slept in and then made a tasty dinner with one of my best friends Brooke and my sister. We made fancy burgers and fries and then went to a movie. All in all the weekend turned out great.
I came home from being gone dogsitting and was met with all sorts of cute Valentines sent to me from friends, including a care package from my cousins in Chicago. So fun, definitely felt the love.
Hope everyone had a great Valentines and Galentines day! Love you all!!
Many would probably think I wouldn't care for it as I have been single for more of them than not - but that isn't the case. I have learned to make it my own and realize that I am surrounded by many people who love me. It doesn't have to be a lover that you are in love with - you can be in love with your friends and family. It is just a day of showing love.
This year I celebrated Galentines Day, a day of celebrating all the girls in your life. I dropped off some treats to friends and had brunch with two lovely ladies. Many people thought I was just misspelling Valentines and celebrating early (as it is celebrated on February 13th) but it was intentional.
On actual Valentines day I slept in and then made a tasty dinner with one of my best friends Brooke and my sister. We made fancy burgers and fries and then went to a movie. All in all the weekend turned out great.
I came home from being gone dogsitting and was met with all sorts of cute Valentines sent to me from friends, including a care package from my cousins in Chicago. So fun, definitely felt the love.
Hope everyone had a great Valentines and Galentines day! Love you all!!
My Valentines!
Nothing like a spirited Utes Valentine!
Tasty Treats
Yummers!
This was at the house I was watching and it cracked me up for some reason...
Perfectly fitting movie for the occasion
My favorite gift of the day...
Galentines Day Brunch
Thursday, February 11, 2016
The Perfect Life Celebration
Last night was Mandy's celebration of life and I must say it was perfect.
Mandy was a different type of girl. She was able to connect with everyone she met, effortlessly. She, even in her worst days, had a spirit and spark in her that made you comfortable and feel like she was your best friend. That was definitely shown tonight.
It was held at an event center - not a funeral parlor and just walking up you could feel the energy. There were balloons and flowers and pictures of dragonflies. Walking in there was a beautiful table full of pictures and trinkets from her as well as a guest book - that was full cover to cover by the end of the night. There was a line to greet the family and that line never stopped. It was easily 100+ people long and it held strong. The family greeted each and every person that stepped foot in that building. There were pictures of that beauty everywhere - damn she was photogenic! The pictures were giant and amazing. She had some great selfies! The slideshow went through all aspects of her journey and was touching. There was tons of food, a soda bar, beer and wine as well as a candy bar. The tables had beautiful flowers and pictures on them as well. It was a celebration, not a funeral. Just what she wanted.
It was hard to walk in and hard to see her face everywhere at first, but after the sadness passed it was a calm and fun energy being surrounded by everyone she knew and loved. There was easily 400+ people there throughout the night and it was amazing, as she liked to say.
I have decided to try and take more selfies and get more dolled up in her honor - she knew how to be a girly girl that is for sure! So far I haven't got a picture that is even close to her cuteness!
Mandy, you may be gone but my dear you are never forgotten. I have thought of you every single day since you left. Your family has been amazing to me and check in on my often, as you know. I want to be able to text and message you at random times - that has been the hardest part so far. Hope you are throwing glitter around like a crazy, the crazy we all knew and loved.
Love you sugar..
Mandy was a different type of girl. She was able to connect with everyone she met, effortlessly. She, even in her worst days, had a spirit and spark in her that made you comfortable and feel like she was your best friend. That was definitely shown tonight.
It was held at an event center - not a funeral parlor and just walking up you could feel the energy. There were balloons and flowers and pictures of dragonflies. Walking in there was a beautiful table full of pictures and trinkets from her as well as a guest book - that was full cover to cover by the end of the night. There was a line to greet the family and that line never stopped. It was easily 100+ people long and it held strong. The family greeted each and every person that stepped foot in that building. There were pictures of that beauty everywhere - damn she was photogenic! The pictures were giant and amazing. She had some great selfies! The slideshow went through all aspects of her journey and was touching. There was tons of food, a soda bar, beer and wine as well as a candy bar. The tables had beautiful flowers and pictures on them as well. It was a celebration, not a funeral. Just what she wanted.
It was hard to walk in and hard to see her face everywhere at first, but after the sadness passed it was a calm and fun energy being surrounded by everyone she knew and loved. There was easily 400+ people there throughout the night and it was amazing, as she liked to say.
I have decided to try and take more selfies and get more dolled up in her honor - she knew how to be a girly girl that is for sure! So far I haven't got a picture that is even close to her cuteness!
Mandy, you may be gone but my dear you are never forgotten. I have thought of you every single day since you left. Your family has been amazing to me and check in on my often, as you know. I want to be able to text and message you at random times - that has been the hardest part so far. Hope you are throwing glitter around like a crazy, the crazy we all knew and loved.
Love you sugar..
Wednesday, February 10, 2016
How it all began ...
I get asked a lot how I found my cancer and the back story to where I am at today. As with anyone who has cancer, it is always an interesting or crazy story. I apologize in advance for how long this post may get but I have a lot to cover!
So about 7 1/2 years ago I woke up one day and I had these red marks on my feet. They were pretty large and tender and I started to think they were bug bites. I got a little panicked and thought maybe they were bed bugs, but when I looked them up it definitely wasn't. I scheduled to go see my family dermatologist and get them checked out. I went in and he said that they were not bug bites but that they were hives. He prescribed a round of predinsone (steroid) and sent me on my way with a follow up appointment. I completed the round of steroids and they continued to be worse. I went to my follow up and he said there isn't anything else they can do and to maybe see an allergy specialist. While at this appointment I had him look at a mole on my forehead that was growing and changing rapidly and just was plain old ugly in my eyes. He looked at it briefly and sent me on my way saying it was nothing to be concerned with.
I left that appointment just knowing that what was happening wasn't right. I scheduled an appointment with an allergy specialist and my hives just continued to worsen, spreading to my hands and arms and then eventually to my neck and face. Not very fun, or attractive. The allergist didn't give me any real answers, just told me what I knew I was already allergic to. By this time I had had the hives for over 2 months, constant. I tried to not let them bother me, and actually just got used to having them. Pretty pathetic actually. One day I went snowboarding and it was a warm day up on the mountain and I came home and just crashed basically. When I woke up I was literally covered, head to toe, in hives. Heat made them worse, but this was just too much. I called my mom and told her I was going to the ER and she met me there. We checked in and they said that they were hives and that since I had already done a round of steroids there wasn't anything else they could do and sent me on my way - in and out in 30 min. ER record in my mind. I really knew something wasn't right and decided to take things to the next level. I called U of U Dermatology and asked if they had a hive specialist - and they did! I go the next available appointment and waited patiently for that day.
My appointment with Dr. Douglas Powell was finally here and I felt that he truly wanted to help me. He took a biopsy of one to make sure they were in fact hives (they were) and we began running through treatment options to help lessen the hives and get me more comfortable. I started seeing him every two weeks to see how things were working. The meds would help reduce the hives, but they never really went away. He kept telling me that there was something happening with my immune system but we just can't pinpoint it, but we will keep trying to figure it out. At one of the appointments I had him look at the crazy mole on my forehead/hairline and he said he wanted to watch it and then possibly biopsy it. The night before my next appointment I was working a wedding at my work and was cutting chocolate cake and a fellow server came up to me and thought I had gotten chocolate cake on my forehead, but nope it was the damn mole! I was determined to get the mole removed the next day, no matter what!
I walked into my next appointment, determined to have him take the mole off and before I could say anything he said that he can see that the mole changed in the two weeks he had seen me and that we were going to take it. So we did just that. A few stitches later and I was on my way. The results came back abnormal - not so much cancer - but that they didn't get it all so I had to have more excised. A few more stitches later, on my way again. Results came back again, abnormal - not cancer - and still not all clear and need to excise more. So we took more and at this appointment we noticed some additional moles starting to grow next to the original site and those were taken as well. At this appointment my doctor said that although it isn't coming back as cancer it was acting like cancer and we need to treat it as such. It was in that removal that it did in fact come back as Melanoma. I was then sent to Huntsman as it was now out of his realm of care and he needed to pass me on to the specialists. I was told on February 10, 2009 that I had Melanoma.
The next appointments were lined up and surgery scheduled to remove the entire mole area (MOHS surgery) as well as a sentinel lymph node dissection. I still didn't realize how serious it all was at this point. I was thinking this would be a in and out procedure and I might need to be off work for a few days. I was corrected pretty fast and then was told I wouldn't be able to lift more than 10lbs for a couple weeks... Oh wow, this was a bit more serious than I thought. Surgery was scheduled and when it came I think I just didn't know what I was in for. When I woke up I had a giant bandage on my head and a lot of shaved hair. I felt terrible, my entire body felt like I had run a marathon - every muscle was sore due to my body clenching during surgery for some reason, possibly the cauterizing tool they used. Regardless, I was miserable. The removal was large, huge even. Big enough that they couldn't close it so I had to have reconstructive surgery a few days later. At the consult for that appointment we got the first look at the hole and there was a sponge sewn in my head!! Literally! The plastic surgeon removed the sponge, leaving the giant hole. My mom told me I wasn't allowed to look at it, and I listened, what?! Now I wish I had seen it, but regardless I didn't.
My reconstructive surgery went well and luckily was done by an amazing surgeon and was able to avoid a skin graft. I was left with an 8 1/2 inch scar and a new hair line. I like to say that I kind of got an eyebrow lift at 26.
Recovery went well and I bounced back fast. It wasn't until after surgery that I understood that I was put at a Stage 3b cancer. That kind of took my breath away and made it all a bit too real. My lymph nodes were clear, but the cancer had found a way to spread locally which made me a stage 3. I was offered some treatment options but at that time I just wasn't in a space that I could do them with confidence so I decided to do observation and if the cancer did come back I would do anything they said. I then had clear scan after clear scans, for all 5 years that they observe you. I had graduated to just skin checks, thinking I was done with this beast. It wasn't until an MRI following a car accident in August 2014 showed an abnormal lymph node. And here we are today. Round 2 of this crazy cancer.
As for the hives, as they tend to get lost in the story, they began to decrease significantly after my first biopsy of the mole. After my final surgeries in 2009 they were non existent. The hives were directly related to the cancer and was my bodies way of signally something was wrong. I knew something wasn't right and if I had just listened to my first (and terrible I might say) dermatologist I truly may not be here today. I had not been well for a long time, just couldn't pin point why. If it weren't for the hives and me listening to my body telling me that something wasn't right, I don't know if we would have found the cancer until it was far too late. So listen to your bodies, if you feel something isn't right don't ignore it. Hives are directly related to your immune system and this isn't the first time I have heard of them being directly related to cancer and signalling cancer somewhere. Just listen and be proactive with your own health. You know your body the best.
Here are some pictures from then. The mole (the best pictures I have of it) is on my hair line, roughly the size of a pencil eraser. It started as a small dot, like a pin head. It was discolored, raised and changed often. I am lucky it was in my hairline where I could see it too.
Do a skin check. Wear sunscreen. Have regular check ups. Be smart. They can't say if my melanoma is from the sun or genetics, regardless I have it. Just be smart!
So about 7 1/2 years ago I woke up one day and I had these red marks on my feet. They were pretty large and tender and I started to think they were bug bites. I got a little panicked and thought maybe they were bed bugs, but when I looked them up it definitely wasn't. I scheduled to go see my family dermatologist and get them checked out. I went in and he said that they were not bug bites but that they were hives. He prescribed a round of predinsone (steroid) and sent me on my way with a follow up appointment. I completed the round of steroids and they continued to be worse. I went to my follow up and he said there isn't anything else they can do and to maybe see an allergy specialist. While at this appointment I had him look at a mole on my forehead that was growing and changing rapidly and just was plain old ugly in my eyes. He looked at it briefly and sent me on my way saying it was nothing to be concerned with.
I left that appointment just knowing that what was happening wasn't right. I scheduled an appointment with an allergy specialist and my hives just continued to worsen, spreading to my hands and arms and then eventually to my neck and face. Not very fun, or attractive. The allergist didn't give me any real answers, just told me what I knew I was already allergic to. By this time I had had the hives for over 2 months, constant. I tried to not let them bother me, and actually just got used to having them. Pretty pathetic actually. One day I went snowboarding and it was a warm day up on the mountain and I came home and just crashed basically. When I woke up I was literally covered, head to toe, in hives. Heat made them worse, but this was just too much. I called my mom and told her I was going to the ER and she met me there. We checked in and they said that they were hives and that since I had already done a round of steroids there wasn't anything else they could do and sent me on my way - in and out in 30 min. ER record in my mind. I really knew something wasn't right and decided to take things to the next level. I called U of U Dermatology and asked if they had a hive specialist - and they did! I go the next available appointment and waited patiently for that day.
My appointment with Dr. Douglas Powell was finally here and I felt that he truly wanted to help me. He took a biopsy of one to make sure they were in fact hives (they were) and we began running through treatment options to help lessen the hives and get me more comfortable. I started seeing him every two weeks to see how things were working. The meds would help reduce the hives, but they never really went away. He kept telling me that there was something happening with my immune system but we just can't pinpoint it, but we will keep trying to figure it out. At one of the appointments I had him look at the crazy mole on my forehead/hairline and he said he wanted to watch it and then possibly biopsy it. The night before my next appointment I was working a wedding at my work and was cutting chocolate cake and a fellow server came up to me and thought I had gotten chocolate cake on my forehead, but nope it was the damn mole! I was determined to get the mole removed the next day, no matter what!
I walked into my next appointment, determined to have him take the mole off and before I could say anything he said that he can see that the mole changed in the two weeks he had seen me and that we were going to take it. So we did just that. A few stitches later and I was on my way. The results came back abnormal - not so much cancer - but that they didn't get it all so I had to have more excised. A few more stitches later, on my way again. Results came back again, abnormal - not cancer - and still not all clear and need to excise more. So we took more and at this appointment we noticed some additional moles starting to grow next to the original site and those were taken as well. At this appointment my doctor said that although it isn't coming back as cancer it was acting like cancer and we need to treat it as such. It was in that removal that it did in fact come back as Melanoma. I was then sent to Huntsman as it was now out of his realm of care and he needed to pass me on to the specialists. I was told on February 10, 2009 that I had Melanoma.
The next appointments were lined up and surgery scheduled to remove the entire mole area (MOHS surgery) as well as a sentinel lymph node dissection. I still didn't realize how serious it all was at this point. I was thinking this would be a in and out procedure and I might need to be off work for a few days. I was corrected pretty fast and then was told I wouldn't be able to lift more than 10lbs for a couple weeks... Oh wow, this was a bit more serious than I thought. Surgery was scheduled and when it came I think I just didn't know what I was in for. When I woke up I had a giant bandage on my head and a lot of shaved hair. I felt terrible, my entire body felt like I had run a marathon - every muscle was sore due to my body clenching during surgery for some reason, possibly the cauterizing tool they used. Regardless, I was miserable. The removal was large, huge even. Big enough that they couldn't close it so I had to have reconstructive surgery a few days later. At the consult for that appointment we got the first look at the hole and there was a sponge sewn in my head!! Literally! The plastic surgeon removed the sponge, leaving the giant hole. My mom told me I wasn't allowed to look at it, and I listened, what?! Now I wish I had seen it, but regardless I didn't.
My reconstructive surgery went well and luckily was done by an amazing surgeon and was able to avoid a skin graft. I was left with an 8 1/2 inch scar and a new hair line. I like to say that I kind of got an eyebrow lift at 26.
Recovery went well and I bounced back fast. It wasn't until after surgery that I understood that I was put at a Stage 3b cancer. That kind of took my breath away and made it all a bit too real. My lymph nodes were clear, but the cancer had found a way to spread locally which made me a stage 3. I was offered some treatment options but at that time I just wasn't in a space that I could do them with confidence so I decided to do observation and if the cancer did come back I would do anything they said. I then had clear scan after clear scans, for all 5 years that they observe you. I had graduated to just skin checks, thinking I was done with this beast. It wasn't until an MRI following a car accident in August 2014 showed an abnormal lymph node. And here we are today. Round 2 of this crazy cancer.
As for the hives, as they tend to get lost in the story, they began to decrease significantly after my first biopsy of the mole. After my final surgeries in 2009 they were non existent. The hives were directly related to the cancer and was my bodies way of signally something was wrong. I knew something wasn't right and if I had just listened to my first (and terrible I might say) dermatologist I truly may not be here today. I had not been well for a long time, just couldn't pin point why. If it weren't for the hives and me listening to my body telling me that something wasn't right, I don't know if we would have found the cancer until it was far too late. So listen to your bodies, if you feel something isn't right don't ignore it. Hives are directly related to your immune system and this isn't the first time I have heard of them being directly related to cancer and signalling cancer somewhere. Just listen and be proactive with your own health. You know your body the best.
Here are some pictures from then. The mole (the best pictures I have of it) is on my hair line, roughly the size of a pencil eraser. It started as a small dot, like a pin head. It was discolored, raised and changed often. I am lucky it was in my hairline where I could see it too.
Summer 2008
I know it is hard to see.. It blends with my hair pretty well
Here are my surgery pictures 3/2009
Left: Lymph node dissection scars (there is a scar in front of my ear too but you can't see it)
Left: Lymph node dissection scars (there is a scar in front of my ear too but you can't see it)
Right: After reconstructive surgery. The right (where the hair is shaved) is the actual Melanoma scar, the rest is the reconstructive scar. They rotated my scalp to close the wound, shifting my hairline down lower on my forehead. The skin/hair at the bottom is from the top of the scar line.
Do a skin check. Wear sunscreen. Have regular check ups. Be smart. They can't say if my melanoma is from the sun or genetics, regardless I have it. Just be smart!
7 years being a cancer patient
February 10th gained a new meaning for me 7 years ago. It was on this day that I was told that I had Melanoma, I had now become a cancer patient. I can remember the night like it was yesterday - I was driving down 21st south heading to a friends birthday dinner when the doctor called me. He asked if I was driving and if I was I needed to pull over. I did, into the SuperSonic car wash and we talked for about 10 minutes and he told me I had Melanoma and what that meant. I knew that wasn't good, but really didn't process exactly what that meant. I wasn't scared, more annoyed at the time that I would have to go to more appointments and switch work and who knows what else. I still went to my friends birthday dinner and it wasn't until the following morning spent in appointments at Huntsman that it all hit on how severe the situation really was.
And here we are today. 7 years, 3 operations and 42 missing lymph nodes, and who knows how many stitches - 15 (18+ really) inches of scar - and sooo many appointment and scans later. I would rather be celebrating 7 years cancer free, but we just aren't there just yet. I will continue fighting and pushing forward through the craziness life throws at me and we'll look back on this when I'm 40 years past my diagnosis date.
Here's to the craziness...
And here we are today. 7 years, 3 operations and 42 missing lymph nodes, and who knows how many stitches - 15 (18+ really) inches of scar - and sooo many appointment and scans later. I would rather be celebrating 7 years cancer free, but we just aren't there just yet. I will continue fighting and pushing forward through the craziness life throws at me and we'll look back on this when I'm 40 years past my diagnosis date.
Here's to the craziness...
Thursday, February 4, 2016
#worldcancerday and cost rant
Today, February 4th, is #worldcancerday. It is a day to not only get people talking about cancer, but to acknowledge all those fighting - whether directly or indirectly. For the past two years this day has fallen close to some very prominent events. Last year I had just been rediagnosed and was getting things in line to start my fight again. This year I am still fighting and I just lost my dear friend to this horrible disease. February is just a very hard month for me it seems. I have major life changing events happen in February - whether I like it all or not. Regardless, World Cancer Day seems to fall perfectly into my cancer story. I am glad there is some more awareness being talked about.
I have been home sick for the past two days and I started to look at some insurance claims and looked at my new med costs. Oh. My. Hell. How are cancer drugs so insanely expensive?! I am so thankful for insurance - I truly don't know what I would do without it. Here are the prices:
My first oral meds - that I didn't finish keep in mind. I still have a 7 day supply...
Mekinist: $10,335.20
Tafinlar: $9,028.70
And my new ones:
Zelboraf (14 day supply): $4,934.49
Cotellic (21 day supply) : $5,910.29
Amazing right? I really should add up how much was spent on me last year, but I truly don't know if I could stomach it. It is definitely more than $750K, easily. That said, with insurance it costs around $550/month out of pocket. For my first month I have been set up on a copay card that brings the cost down substantially.
Anyway, thought it was interesting and so I thought I'd share!
Hoping I start feeling better soon (it isn't side effects, it is a stomach bug) and that life starts mellowing out around me soon. We shall see!
I have been home sick for the past two days and I started to look at some insurance claims and looked at my new med costs. Oh. My. Hell. How are cancer drugs so insanely expensive?! I am so thankful for insurance - I truly don't know what I would do without it. Here are the prices:
My first oral meds - that I didn't finish keep in mind. I still have a 7 day supply...
Mekinist: $10,335.20
Tafinlar: $9,028.70
And my new ones:
Zelboraf (14 day supply): $4,934.49
Cotellic (21 day supply) : $5,910.29
Amazing right? I really should add up how much was spent on me last year, but I truly don't know if I could stomach it. It is definitely more than $750K, easily. That said, with insurance it costs around $550/month out of pocket. For my first month I have been set up on a copay card that brings the cost down substantially.
Anyway, thought it was interesting and so I thought I'd share!
Hoping I start feeling better soon (it isn't side effects, it is a stomach bug) and that life starts mellowing out around me soon. We shall see!
AM Pills: $176.23 PM Pills: $457.67
*if I didn't have insurance that is
Tuesday, February 2, 2016
New Month, New Meds
Today I started my new meds - Cotellic (Cobimetinib) and Zelboraf (Vemurafenib). Try and say that 3 times fast... The Zelboraf are giant pills and I have to take 4 tablets twice a day, and the Cotellic are small and I take 3 tablets once a day for 21 days, then have a 7 day break from them.
Why the new meds? Well I ran into some pretty severe side effects all at once on my last combo of the Braf/Mek Inhibitors so we are trying this combo to see if we can still have some good tumor shrinkage still. These are still Braf/Mek inhibitors, just different. The best way I can describe them is to say that just like Tylenol or Aspirin both treat headaches, these both do the same thing just are slightly different. This combo is said to have a less aggressive side effect profile so things shouldn't get as bad as fast as it did with the previous combo.
My next appointment is February 23rd and I will have scans at that time to. We will reevaluate everything, once again, at that time.
I am happy to be back on a treatment because in those 10 days that I was off the meds my tumors began to grow and fast. I don't like being able to feel and see this cancer in my body let alone growing. Hoping to see them start shrinking again soon!
Thank you all for such sweet words following the loss of my dear friend Mandy. It has been a rough few days but also so amazing to see so many people sharing their memories and photos of her on social media. She was one very loved woman and is definitely missed.
Why the new meds? Well I ran into some pretty severe side effects all at once on my last combo of the Braf/Mek Inhibitors so we are trying this combo to see if we can still have some good tumor shrinkage still. These are still Braf/Mek inhibitors, just different. The best way I can describe them is to say that just like Tylenol or Aspirin both treat headaches, these both do the same thing just are slightly different. This combo is said to have a less aggressive side effect profile so things shouldn't get as bad as fast as it did with the previous combo.
My next appointment is February 23rd and I will have scans at that time to. We will reevaluate everything, once again, at that time.
I am happy to be back on a treatment because in those 10 days that I was off the meds my tumors began to grow and fast. I don't like being able to feel and see this cancer in my body let alone growing. Hoping to see them start shrinking again soon!
Thank you all for such sweet words following the loss of my dear friend Mandy. It has been a rough few days but also so amazing to see so many people sharing their memories and photos of her on social media. She was one very loved woman and is definitely missed.
Zelboraf pills
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