Today is a great day in the world of melanoma treatment!
One of the clinical trials I am involved in was just approved by the FDA for treating late stage melanoma. My doctor, Dr. Robert Andtbacka, is one of the two doctors who published the results last year in a medical journal. Again, I am so lucky to have such amazing doctors on my team.
Here is the link to the article: A Cancer-Killing Cold Sore Virus Fights Late Stage Melanoma
This is the first trial I enrolled in and I was randomized to not receive the injections (T-VEC), only surgery. The second, and my current treatment, is also a form of the cold sore virus (herpes simplex 1) but just a different modification - named HF10.
It is great to see such progress in the treatment of this awful disease. Can't wait to beat it once and for all!
Tuesday, November 3, 2015
Sunday, November 1, 2015
32
Today is my 33rd birthday. I love birthdays, unlike some people. I love having a reason to celebrate and a reason to get my friends all together.
I always look back on the past year and try and find the highest points and also the lowest, and try to take away some good things to continue on with for the next year. 32 was rough. Some may even say it was bad or horrible. But there was also a lot of good things too. Late November last year is when I got the call saying there was a large lymph node in my neck and that I needed to get it checked. That is when my second melanoma journey started. I followed up that phone call with a CT scan and then a biopsy. And then surgery, then chemo, then this current treatment. Definitely a trying year. Definitely a medical year! I spent 14 nights in the hospital. Received over $750K in treatment/medical, so far (thank heavens for insurance!!) I've had some of my toughest/sickest days of my life this year, and know what it really means to not feel good. I've formed a medical family with my doctors and nurses - I see them more than some of my family! I met my cancer soul sister Mandy, someone who I can't explain the closeness we have since we are in the same boat. I hate to see her struggle, but happy to offer her some comfort in the battle. I have been poked far more than any other year and know what veins are good and what aren't... I have become an expert on melanoma and explaining my current situation. All these things, although could be bad, make up who I am today in this very moment.
During this last year I also realized the love and support I have surrounding me. My friends and family really showed up and it helped me get through some of my toughest days. From amazing fundraising campaigns that have helped support me for almost a year as well as the numerous gifts, food and care packages. Constantly checking in on me through texts, emails and calls. Truly making me feel loved.
I have shorter hair than I ever imagined I would have, and I actually like it. I have learned to look around and be happy for the little things - things I definitely overlooked before this year. I have lost 40lbs (not the way I would want to, but still) and hope to lose more this coming year, get more healthy. I wore skinny jeans for the first time! I have traveled with some great friends to some amazing and relaxing places. I watched my friend get married and look happier than I have ever seen her. I have watched my best friends babies grow and steal my heart one smile and giggle at a time. Life has been good. It wasn't a bad year, it was a trying year and a growing year.
33 looks good going forward - besides 33 sounds like a lucky number and I'll make it prove it. Here's to a great year!
I always look back on the past year and try and find the highest points and also the lowest, and try to take away some good things to continue on with for the next year. 32 was rough. Some may even say it was bad or horrible. But there was also a lot of good things too. Late November last year is when I got the call saying there was a large lymph node in my neck and that I needed to get it checked. That is when my second melanoma journey started. I followed up that phone call with a CT scan and then a biopsy. And then surgery, then chemo, then this current treatment. Definitely a trying year. Definitely a medical year! I spent 14 nights in the hospital. Received over $750K in treatment/medical, so far (thank heavens for insurance!!) I've had some of my toughest/sickest days of my life this year, and know what it really means to not feel good. I've formed a medical family with my doctors and nurses - I see them more than some of my family! I met my cancer soul sister Mandy, someone who I can't explain the closeness we have since we are in the same boat. I hate to see her struggle, but happy to offer her some comfort in the battle. I have been poked far more than any other year and know what veins are good and what aren't... I have become an expert on melanoma and explaining my current situation. All these things, although could be bad, make up who I am today in this very moment.
During this last year I also realized the love and support I have surrounding me. My friends and family really showed up and it helped me get through some of my toughest days. From amazing fundraising campaigns that have helped support me for almost a year as well as the numerous gifts, food and care packages. Constantly checking in on me through texts, emails and calls. Truly making me feel loved.
I have shorter hair than I ever imagined I would have, and I actually like it. I have learned to look around and be happy for the little things - things I definitely overlooked before this year. I have lost 40lbs (not the way I would want to, but still) and hope to lose more this coming year, get more healthy. I wore skinny jeans for the first time! I have traveled with some great friends to some amazing and relaxing places. I watched my friend get married and look happier than I have ever seen her. I have watched my best friends babies grow and steal my heart one smile and giggle at a time. Life has been good. It wasn't a bad year, it was a trying year and a growing year.
33 looks good going forward - besides 33 sounds like a lucky number and I'll make it prove it. Here's to a great year!
Saturday, October 31, 2015
Happy Halloween!
Halloween is my favorite holiday! I love to get dressed up and see what people come up with. This year was no exception! I was Sadness from the movie Inside Out.
Happy Halloween!
Happy Halloween!
Wednesday, October 28, 2015
Passport
So as I said I am going to Mexico on Sunday. Well you need a passport to get into Mexico, which I have but I could not find it! I looked where I thought it was and nope, not there. I then looked through everything at my house that I could and still no where. Thats when I realized that it is probably in my dang storage unit.. Yep. I packed it away.
See here is the reasoning that I did this. In early 2014 I had back surgery and had some major complications. I moved in with my sister after surgery to recoup, not thinking I would be there long, maybe 3 months? I really wasn't planning on staying once I was better. Well I had complications and wasn't able to return to work, thus no income really so I had to permanently move from my place with my roommate and into my sisters. I decided to store all my things in a storage unit, again, not thinking it would be more than a couple months. Since I wasn't able to lift really anything at the time, my dad has some of the guys from his work help move the things into the unit and thus it was packed so terribly that you couldn't get into the unit at all. Nothing had an order to it and things were everywhere. Complete disaster. It doesn't help that I have sooo much stuff. I have enough stuff for a full house (minus the furniture), all season decor, as well as an entire business (Sweet Janes, hence the name of this blog if you ever wondered). Once I realized my passport was somewhere in there I paniced. I luckily have some amazing friends who were my muscles and helped me disect my hoarding unit, I mean storage unit. We were about half way in and came across my gun safe (I don't have a gun but was going to have one so my dad bought us gun safes) and a memory flashed that I put it in there! And luckily there it was! Success!
After celebrating finding it, we repacked the things in somewhat of an order and took some things to donate and some things to throw out. It turned into a good day, even though it didn't start that way!
Passport is now in hand and lesson learned, never pack such important things. Safe deposit box may be in my future... Mexico here I come!
See here is the reasoning that I did this. In early 2014 I had back surgery and had some major complications. I moved in with my sister after surgery to recoup, not thinking I would be there long, maybe 3 months? I really wasn't planning on staying once I was better. Well I had complications and wasn't able to return to work, thus no income really so I had to permanently move from my place with my roommate and into my sisters. I decided to store all my things in a storage unit, again, not thinking it would be more than a couple months. Since I wasn't able to lift really anything at the time, my dad has some of the guys from his work help move the things into the unit and thus it was packed so terribly that you couldn't get into the unit at all. Nothing had an order to it and things were everywhere. Complete disaster. It doesn't help that I have sooo much stuff. I have enough stuff for a full house (minus the furniture), all season decor, as well as an entire business (Sweet Janes, hence the name of this blog if you ever wondered). Once I realized my passport was somewhere in there I paniced. I luckily have some amazing friends who were my muscles and helped me disect my hoarding unit, I mean storage unit. We were about half way in and came across my gun safe (I don't have a gun but was going to have one so my dad bought us gun safes) and a memory flashed that I put it in there! And luckily there it was! Success!
After celebrating finding it, we repacked the things in somewhat of an order and took some things to donate and some things to throw out. It turned into a good day, even though it didn't start that way!
Passport is now in hand and lesson learned, never pack such important things. Safe deposit box may be in my future... Mexico here I come!
This is what we had to start with... Good hell....
One of my amazing helpers!
Success!!
After, I know it doesn't look much different but it is 1000 times better!
Soo happy to have found it!
Friday, October 23, 2015
Hurricane Patricia
On November 1st I am going to Puerto Vallarta, Mexico as a birthday trip. It is the biggest trip I have planned since all my cancer fun started in January. Granted I have gone to Seattle and some local places in Utah, but nothing this big! I haven't left the country for 3 or so years, and haven't been to Mexico for 7 years. I am going with my mom and her friend and then two of my best friends - I am pretty excited!
All that excitement has been slapped in the face when I got a text from my dad asking if I am tracking the hurricane approaching Mexico. Well I wasn't worried about it until I started looking at the news reports and realizing this is the biggest hurricane to ever form in the pacific, if not everywhere. If there was a category 6, this would be that. And it was heading straight for Puerto Vallarta.
I watched it make landfall tonight and it isn't looking as disastrous as it was expected to be. Hopefully things will be alright to go in a week and that the city is still in one piece. They aren't reporting much from the ground so we wont know until tomorrow I am assuming. We've checked on canceling and it doesn't look like it is much of an option at this point. Guess we shall see!
***UPDATE***
Patricia didn't hit nearly as hard as expected and our resort as well as our excursion place basically weren't effected by it. So the trip is on! We will see what the city looks like, and hoping there isn't much flooding or mudslides like they are expecting. I am excited to still have a vacation and that really no one was injured! So great!
Thursday, October 22, 2015
Caught by Surprise
Yesterday was my treatment day and surprisingly it went very fast for a treatment day. My blood draw was quick - first poke which was nice! And then the doctors were on schedule if not ahead. My doctors aren't usually on time which can be frustrating to most people but when you realize they are dealing with some very intense situations and patients. I mean it is a cancer hospital.. When they are in your room you are their #1 priority and they will stay in there as long as needed, until every question is answered and everything is covered. So I have to keep that in mind when it takes 1-3 hours to get seen. It is just part of this crazy journey! But that wasn't the case yesterday, they were early! My drug/injection was released quickly too so after I was measured (my big tumor is bigger by about a centimeter and my small one is smaller by about a half centimeter) and some side effects were discussed we did the injection and I was on my way. We injected from a different angle and I felt it more but it wasn't too bad.
I then left and actually worked an event for a friend for 3 hours and then finally went home to relax. Even though treatment days aren't really that physically hard, it is mentally challenging so it is nice to just have the evening to do nothing. I got some food, watched some tv and headed to bed. .
I have been dealing with some insomnia lately. I could be absolutely exhausted and lay down to sleep and will lay there half asleep for hours. So that was the case last night. I headed to bed around 10:30 and then at 1am was fully awake, shivering. I kept thinking "how am I so cold?" I was under multiple covers and the heat was on.. then it hit me. These are the side effects they had warned me about all along with the injections - chills, fever, body ache. I felt my face and it didn't seem warm so I continued to lay there. After about another 30 minutes I finally decided to take my temperature.. 100.3. Damnit! I also had some strong nausea and ended up throwing up. Double damnit! I am housesitting so I was alone and didn't want to fall asleep and go into a huge fever so I set my phone alarm for every 45 min to keep checking. And the fever kept climbing. I started googling at what level do you go into the emergency room for a fever. Just so you know, that is 103. As it kept climbing I started to think of who could take me if needed and how annoying it will be to have to explain my entire medical history to the emergency doctor and what they could even do for me. At 4:15am my fever hit 101.9. I set the alarm for 30 minutes and finally at 4:45am my fever broke and was at 99.4. I was then finally able to fall asleep for real and I woke up purely exhausted. I was still nauseous too. I had to go to work for a bit and I made it through that and came back and took a good nap.
I am thankful the fever has not returned today, here's hoping it stays away. I was so caught by surprise by these side effects since I haven't had them at all through all this. They were saying that the farther out from the Ipilumumab the more the injections will have side effects. I am now 6 weeks out so we shall see how the next round does.
The study also added scans to my next appointment. They want them 9 weeks after stopping the Ipi. Scans are on 11/10 and my next appointment is 11/11. It will be interesting to see if anything has changed in the short 6 weeks.
I'm grateful that I haven't had many side effects during this treatment but man last night sucked and caught me by surprise! Now I know what to expect going forward!
I then left and actually worked an event for a friend for 3 hours and then finally went home to relax. Even though treatment days aren't really that physically hard, it is mentally challenging so it is nice to just have the evening to do nothing. I got some food, watched some tv and headed to bed. .
I have been dealing with some insomnia lately. I could be absolutely exhausted and lay down to sleep and will lay there half asleep for hours. So that was the case last night. I headed to bed around 10:30 and then at 1am was fully awake, shivering. I kept thinking "how am I so cold?" I was under multiple covers and the heat was on.. then it hit me. These are the side effects they had warned me about all along with the injections - chills, fever, body ache. I felt my face and it didn't seem warm so I continued to lay there. After about another 30 minutes I finally decided to take my temperature.. 100.3. Damnit! I also had some strong nausea and ended up throwing up. Double damnit! I am housesitting so I was alone and didn't want to fall asleep and go into a huge fever so I set my phone alarm for every 45 min to keep checking. And the fever kept climbing. I started googling at what level do you go into the emergency room for a fever. Just so you know, that is 103. As it kept climbing I started to think of who could take me if needed and how annoying it will be to have to explain my entire medical history to the emergency doctor and what they could even do for me. At 4:15am my fever hit 101.9. I set the alarm for 30 minutes and finally at 4:45am my fever broke and was at 99.4. I was then finally able to fall asleep for real and I woke up purely exhausted. I was still nauseous too. I had to go to work for a bit and I made it through that and came back and took a good nap.
I am thankful the fever has not returned today, here's hoping it stays away. I was so caught by surprise by these side effects since I haven't had them at all through all this. They were saying that the farther out from the Ipilumumab the more the injections will have side effects. I am now 6 weeks out so we shall see how the next round does.
The study also added scans to my next appointment. They want them 9 weeks after stopping the Ipi. Scans are on 11/10 and my next appointment is 11/11. It will be interesting to see if anything has changed in the short 6 weeks.
I'm grateful that I haven't had many side effects during this treatment but man last night sucked and caught me by surprise! Now I know what to expect going forward!
Sunday, October 18, 2015
Miles for Melanoma Salt Lake City
Yesterday was the first Miles for Melanoma walk in Salt Lake City. It was a gorgeous morning for October and it was good to see people out supporting a good cause.
I was told about this walk by a cousin just days before, on Tuesday. How I hadn't heard about it I don't know. But what I know is that it definitely needs more publicity for next year. I am up at the dermatology clinic every 3 weeks, if not more, and there wasn't any signage or anything for it. Also, I follow many melanoma pages and also nothing.
I put out my fundraiser feelers on Thursday night and within one day I had reached my goal (only $100 but still) by race day I had raised over $340. By the end of Saturday I was close to $500. My army is amazing!! They have been soooo giving through all this and then continue to give. It truly amazes me. Because of my amazing army, I am the #2 fundraiser for the walk overall and was given a prize of $100 gift card to Best Buy for being the fastest fundraiser. Pretty amazing if you ask me!
The walk had maybe 50 or so people there, no signs, very minimal. It made me frustrated to think that if it were a breast cancer walk that there would be 100's if not 1000's of people there. It also doesn't help that October is breast cancer awareness month so it already is overshadowed. I was still grateful for the people that were there and you could tell that they all were affected by this horrible cancer personally.
I was joined by my cousins Brooke and Jayne as well as my #1 supporters Maryann and her son Jack. I knew I wouldn't walk the full 5k and when I woke up that morning I was very nauseous so I wasn't even going to walk at all. Luckily Maryann encouraged me to at least try to walk some of it and so I did. I made it maybe 1k, or half a lap around the park (which has some gnarly hills) and then decided to not push my luck. I then watched all the amazing participants finish. It was a good day overall.
Jack, who is 6, is one of my little buddies. I guess when his mom (Maryann) said that they were going to come to the walk for me he said "but she isn't even sick anymore, I mean I don't even really notice her neck anymore." Sweet kid. But sadly I am still sick. I may not look like it so much anymore, but it is a battle with myself. I put a good face and foot forward and try to act not sick as much as I can but sadly I am still sick. I still have a cancer inside me, it just isn't beating me up as hard as it has a few months ago. Every day is a battle with fatigue, headaches and nausea. Thankfully the nausea has gone down but I still feel as though I could sleep all day. I force myself out of the house just because I know I shouldn't just sit around all day. I'm glad people think I am doing better though - as I am MUCH better than I was earlier this year. Sweet kid for being so honest about it all.
That said, I am not going to let this bring me down. I hope to get more involved with the walk for next year and make it bigger and better. Here is to fighting melanoma one step at a time!
I was told about this walk by a cousin just days before, on Tuesday. How I hadn't heard about it I don't know. But what I know is that it definitely needs more publicity for next year. I am up at the dermatology clinic every 3 weeks, if not more, and there wasn't any signage or anything for it. Also, I follow many melanoma pages and also nothing.
I put out my fundraiser feelers on Thursday night and within one day I had reached my goal (only $100 but still) by race day I had raised over $340. By the end of Saturday I was close to $500. My army is amazing!! They have been soooo giving through all this and then continue to give. It truly amazes me. Because of my amazing army, I am the #2 fundraiser for the walk overall and was given a prize of $100 gift card to Best Buy for being the fastest fundraiser. Pretty amazing if you ask me!
The walk had maybe 50 or so people there, no signs, very minimal. It made me frustrated to think that if it were a breast cancer walk that there would be 100's if not 1000's of people there. It also doesn't help that October is breast cancer awareness month so it already is overshadowed. I was still grateful for the people that were there and you could tell that they all were affected by this horrible cancer personally.
I was joined by my cousins Brooke and Jayne as well as my #1 supporters Maryann and her son Jack. I knew I wouldn't walk the full 5k and when I woke up that morning I was very nauseous so I wasn't even going to walk at all. Luckily Maryann encouraged me to at least try to walk some of it and so I did. I made it maybe 1k, or half a lap around the park (which has some gnarly hills) and then decided to not push my luck. I then watched all the amazing participants finish. It was a good day overall.
Jack, who is 6, is one of my little buddies. I guess when his mom (Maryann) said that they were going to come to the walk for me he said "but she isn't even sick anymore, I mean I don't even really notice her neck anymore." Sweet kid. But sadly I am still sick. I may not look like it so much anymore, but it is a battle with myself. I put a good face and foot forward and try to act not sick as much as I can but sadly I am still sick. I still have a cancer inside me, it just isn't beating me up as hard as it has a few months ago. Every day is a battle with fatigue, headaches and nausea. Thankfully the nausea has gone down but I still feel as though I could sleep all day. I force myself out of the house just because I know I shouldn't just sit around all day. I'm glad people think I am doing better though - as I am MUCH better than I was earlier this year. Sweet kid for being so honest about it all.
That said, I am not going to let this bring me down. I hope to get more involved with the walk for next year and make it bigger and better. Here is to fighting melanoma one step at a time!
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