#rallyruby

I have some friends that I met in high school, Ali and Mark. Although we have never been close, we have been close acquaintances if that makes any sense. The kind of friends you keep up on through social media and get really excited when you run into them.
Ali and Mark have three daughters, Siri, Jane and Ruby. All cute little blondies - with two of the best parents ever, seriously. Their youngest, Ruby, was born with a mass growing on her neck. This mass is/was not really classified as melanoma at the time but tested positive for some signs of it. They were instructed to not remove it and watch it (it wasn't presenting as cancer, just a tumor). For 2+ years it stayed the same, and in January of 2015 they had it removed because it began to grow very fast. Once removed they sent it for testing and it again presented as melanoma but not really melanoma. Once it came back as not 100% melanoma they were instructed to watch it and come back in a year for routine scans. The scans were pushed back to March due to illness and family things, and on her MRI this month there was a circle spot in her little lungs. They did a CT scan to get a better picture of it and it came back with numerous nodules in her lungs. This led to a lung biopsy the following week. Cute little Ruby had her lung biopsy done surgically and stayed over in the hospital to heal with a tube in her lung. Preliminary results are showing that it is metastatic melanoma, and will be stage 4. She is scheduled for a PET scan early next week and is planning to head to San Francisco to a child hospital there that has the means (and doctors/specialists) able to treat her and her rare situation.

This all is ripping at my heart strings so much. It makes me hate cancer so much more than I thought possible. It is one thing for me to be going through this battle because I can understand why I am constantly being poked or why I have drugs/poison infused into me and why I am sick and can wrap my head around the "what ifs" and prognosis. This is a 4 year old girl, full of life and spunk. She doesn't deserve to be dealt this battle and the odds stacked so so high against her. Her parents don't deserve this challenge and pain that lies ahead. I am not saying I deserve it by all means, but it is just easier for a 33 year old to deal with than a sweet, innocent child.

Please keep Ruby and her amazing family in your thoughts and prayers (if you do that) and feel free to read their updates on http://thacksmack.blogspot.com/

If you have any spare $$ too, this is their fundraising page. They will be temporarily living in San Francisco (well at least one of them) during the treatments, it could be a long and very expensive road. https://www.gofundme.com/RallyRuby

Timeline sinking in

Today I had my normal monthly appointment to go over how treatment is going and we map out the next months plan, talk about side effects etc. No scans this month, they are in 4 weeks.

Ever since we decided that I would do this treatment, my third choice if you remember, I knew that this isn't the last treatment I would be doing as it isn't a permanent/end game treatment. It is more of stepping stone to get to the next treatments and also a requirement from the insurance companies to do (don't you just love that?) Most patients stop responding to the treatment 6-9months in and again almost all have re-occurrence of cancer growth within two years of finishing the treatment.
I am entering into my 4th month on this type of treatment. I asked today how long I could stay on it and I was surprised when they said that I could technically be on it indefinitely, but again most people see little response rate between months 6-9 and then move on to the next treatment. He then laid out the next steps they are thinking for me and that would be to stay on this until August (7 months in), unless my body decides to not tolerate it sooner, and then switch to the hard hitting Nivolomab/Ipilumimab combo. This combo is not covered by my insurance as of now so I would have to get a grant from the drug companies approved. The petition is already in, but is on hold until we get to that point in treatment (the company requires you to start the drug within a week of granting you drug, so we can't do it until we are ready.)

For some reason, even though I knew this all along, it hit me hard today that I will be in treatment for at least 7 months, but looking more like a year plus. Just thinking of being here again next year and still on treatment is a bit overwhelming to me. Is it because I am not sure if I can make plans for that whole time? That life can't move forward while still on this path? That cancer does have a reign on me, more than I am allow myself to understand? I am not sure. But today just kinda was a blah day when I really wrapped my head around what my life will look like for the next year+.

My plan, and I will have to actively work on thinking and acting in this way, is to have cancer be the best thing that happened to me. Happened, in the past tense because I want to believe that I can truly beat it for good. I hope to actually start working while I feel good, taking it week by week as possible. I want to give myself permission to live as though I am not fighting cancer. Not let it reign me and all that I do. I want cancer to have given me a different look on life and not take things for granted, live in the moment. Not think and worry about what everyone is thinking and judging me on. We'll see how this all goes. Trying to not get too far into my thoughts of the coming year. Thinking in the now, not the months down the road.

Silly life, you sure know how to be complicated at times!

My Sunday Night

Many people comment on how well I am handling this crazy situation and how positive I have stayed through all the ups and downs of this battle. Most days I do well and try to live my life like cancer doesn't have a hold of me. As I have said before, I made a conscious decision early on to not let cancer get the best of me and to approach it with positivity instead of anger. Some days are easier than others and believe me I have enough down moments, I just try not to marinate in them and focus on the things that are going good in my life.

All that said, you can't control the subconscious, as I learned the hard way last Sunday night. I was dogsitting one of my regular dogs and went to bed around 11:30. I woke up around 3am to go to the bathroom and once there I realized I needed to throw up. Not so fun, but just part of having cancer and being in treatment. So, I assumed the position and then proceeded to just wretch/dry heave violently without anything coming up. My body wasn't allowing it to come out, almost like holding it back. I know these are details that you probably don't want to know, but I was violently wretching over and over again, 10 times total. I sat next to the toilet and my mind began to wander and started to question if my body needed to get whatever was in me out and it wasn't allowing it. And then I started to violently shake, my whole body basically convulsing. And then started hyperventilating. I was semi coherent as to what was going on and then snapped out of it and realized that in this moment what is happening is crazy! I rushed to my phone and called 911. Yep, 911. I knew that I couldn't get anyone to me fast enough and I was terrified at what was happening. It seemed like an eternity before the paramedics got to the house and I tried to calm my breath and ease my shaking but had no luck. I was still insanely nauseous too. They finally got there and I was taken to the hospital (U of U, not the usual place but I requested to go there because if it was cancer related then I wanted to be as close to Huntsman as possible) I finally threw up on the way to the hospital which helped ease my mind, but I was still hyperventilating and shaking. Once at the hospital they started an IV and got anti-nausea meds in me as well as started fluids. I was able to reach my mom and sister who came to the hospital in the wee hours or the morning. Once my mom got there I literally started listing off things that needed to be done and random things, cause I really didn't know what was happening; just in case things went downhill from there. I started researching severe side effects to my treatment, came up with hyper-toxicity. I made her repeat it to me just so I knew someone would know. Doctors weren't too concerned with that and weren't thinking it was anything cancer related. I finished my fluids, my shaking and breathing settled and they sent me home around 10am.

I wasn't having hyper-toxicity, I was in the middle of a full blown, knock down panic attack. I didn't of course realize this until later that day when I was back home resting. I slept pretty much the entire day Monday and when I was awake I sat and thought through it all. I had feelings of shame and embarrassment and didn't even know if I wanted to share this with anyone. As a society we look down on weakness and vulnerability; and succumbing to anxiety is in the center of both of those things. It took me until later in the week to realize that this is just where I am right now. Yes, it is scary to think that I have bottled up so much anxiety about what is going on with me that it grew into such an intense and scary situation, but again, that is where I am at in this very moment. I have had a lot on my plate for the past few years (obviously more in the past year) and the past two months have been extra trying and new stresses have come up and then the stresses of what the future holds. It just gets to be a lot, more than I was aware of obviously. There were some other things that night that triggered some of this, but that is for another post.

I decided to share this because, well, why the hell not. The people who want to know my journey don't want to just know the big and good parts of it, they want the whole thing; the good, bad and difficult times. Also, not sharing it gives it more power and shame. If the people in my life can't handle that I have bad days, then they shouldn't be around me right now. They can jump back on when things get back to "normal" I suppose. I am embracing this hurdle and working on sorting though my anxiety - even if I don't feel it every day. I am working with my doctors to manage my stress and anxiety going forward. You can't help the situation if people don't know what the situation is. I am still figuring it out, but trying to own my story and all the stressors in it. I am serious when I say one day at a time, and sometimes 10 seconds at a time.

And we're back on track

On Monday my doctors decided to pause my meds and start me on a low dose of prednisone (steroid). This is because I was having multiple side effects creep in as well as the skin issues (that's the main reason for the prednisone, as well as the joint pain/issues) After just one dose of the steroid my symptoms started to reside and I began feeling better. By the time of my appointment yesterday, Wednesday, most of my skin issues had subsided and I wasn't having any other real side effect issues. At the appointment we talked about our plan. I was really hoping they wouldn't take this option away as I am not ready to be down one more option. My opinion in the matter is that I am fighting cancer and taking drugs made to kill and take down cancer - I don't expect to feel well. I expect to have side effects and know I will have to manage them and work through them until we don't have to anymore. I can handle some side effects. Although I felt crappy, I have felt more crappy in this battle, I can handle it.
So with all that said, we decided to restart the meds just at a slightly lower dose. Instead of taking 4 pills AM/PM of the Zelboraf I will now take 3 AM/PM and then then 2 pills instead of 3 pills of the Cotellic. I will also stay on prednisone (20mg) once a day for at least a week and then begin to taper and hopefully we can stay at a low low dose of that to control the skin and joint issues. I am not a big fan of prednisone as it makes me a bit wired, irritable and the worst of them all is makes me a ravenous eater. ie: a fat kid in a bakery. BUT if taking it means I can continue on the cancer fighting meds it is worth attempting to be a bit regulated as far as my diet and just go from there.  We are going to see how I handle this new dosing and unless something comes up I wont see the doctor for another 2 weeks. Ideally we will stay on this regimen for at least another month and a half until my next scans in April and then reevaluate as per usual.
Since I have felt better I have worked a couple days this week at my job at Market Street/GINC. Ironically today (3/10) is my original hire date in 2006. It is funny that I took on a new responsibility today, 10 years later. I had a 3 year hiatus so I only have really physically worked for the company for 7 years. Still, you know how I am a sucker for anniversaries! They have been great working with me and my "situation" and have been very flexible with me. I am able to work when I feel well, and able to take a day or so if I don't feel good. It is nice to know I have a say in when I am working.

Prednisone also makes me a bit scatter brained and spastic, if you can't tell from this post jumping all over. I'll have to fine tune that and work off that energy for now!

As for now I'll keep busy and hopefully keep away from too many side effects.  One day at a time my friends!

Creepers...

Side effects... They are creepers. You're going a long just fine and then boom, there's a side effect and then BANG another! And another! Welcome to my life this last week.
On Thursday I started getting a few of the hive/welts sneaking in. On Friday there were a few more as well as a rash on my back that was starting and joint pain. Then Saturday came the nausea and chills, low low fever (99). Sunday was all of the above plus extreme fatigue and I spent the entire day in bed or in my chair relaxing. Not the most fun of a weekend but you never know what your days will bring when you are actively fighting cancer (one of my biggest struggles with this battle, to say the least).
Called the doctors on Monday morning and tried to downplay the side effects - hoping they would just try some more prednisone for the rash/hive situation and I would just truck through the other issues but they could see right through it all and decided to pause the meds for now and have me come in tomorrow (Wednesday) to go over the plan of action.
Not going to lie, not too happy about this all. On the first round of these meds this year (Mekinist and Tafinlar) I made it 21 days until we stopped the meds. On the new ones (Zelboraf and Cotellic) I made it through an entire month cycle plus 6 days. Which is pretty good in my mind. I'm hoping the doctors just give my body a brief recoup and we restart on the meds and finish at least another month on them. Why you ask? Because once this option is off the table that means there is only 2 more approved treatments available or it is clinical trials. My options become more and more slim. Just doesn't leave a very comforting feeling in me.
As far as the drug that we have been waiting to see if it is cleared through the drug company - that is still in the process. Once we knew we would be trying these drugs we put a hold on the request. It is still an option if we need it to be. The other drug that the insurance denied last will now be approved because I tried the drugs I am currently on - just something that had to be checked off the list before they would approve it. You have to try drug A and drug B in order to receive the awesome drug C. Gotta love insurance companies! But really I don't know what I would do without insurance... such a crazy cycle.

Not sure what tomorrows appointment will bring but I guess we will just have to wait and see. As for today I feel much better than yesterday. I have had actual food and snoozed/relaxed most of the day and planning on going to IHOP later for International Pancake Day to support my sisters company Children's Miracle Network - gotta get out of the house at least once in a day! Even if it is to play with the dog outside.

I'll keep you posted!
One moment at a time...

Snacks and a show... 

Sunday... 

February 27

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!

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.

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)

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. 

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!