Monday, July 30, 2012

My dad, My hero

This is the last photo we took together. I had to edit it because it was so dark. Now we just look red lol.

I love you dad, so so much. You’re my hero. The best dad anybody could ever hope to have. Thank you for everything you taught me and gave me. Thank you for your never-ending love, support, friendship, and advice.

He fought his melanoma so hard and in the end, it was blood clots that took his life, but he fought during that battle too. The doctor's and nurses who have worked at OHSU for over 20 years all said that they have NEVER seen somebody as sick as my dad who was able to talk, let alone joke around and carry a conversation. They said it was a miracle he wasn't in a coma until his heart stopped. That's my daddy for ya-always beating the odds and fighting. He will be missed by everyone who ever met him. I love him so much.

I miss you so much, dad. There aren't enough words to express that.

RIP Scott Stewart


Saturday, July 28, 2012

RIP Daddy

I have very sad news. As of 11:45p my dad passed away. He was admitted yesterday and they found a 12 inch blood clot in his left thigh, and then they discovered 2 blood clots on each lung. This was a shock to all of us. After a hell of a fight his heart was strained too much (from the clots) and he lost his fight. The doctor's and nurses did everything they could. My mom and I were there until the end. The nurse gave us 2 locks of his hair, as well as 4 sets of his hand prints and a beautiful memory box to put pictures and things in. He is no longer in pain and I am so thankful for that. Thank you all so much for your love and support. I am in shock right now, still trying to piece it together. In the end it wasn't the melanoma that got him. We are shock. Truly. Thank you all for your kind words, support, encouragement, prayers, and love.

I love you dad, so very much. You were  my world and you meant everything to me. I know you are no longer in pain and I am so happy for that. I love you. Rest in peace.

Tuesday, July 24, 2012

Interesting Article.

This is an article about the chemo my dad just finished (Yervoy) and a chemo pill he MAY be put on depending on what his PET scan shows. After reading this article I really feel it is a bad idea for him to take the Zelboraf. My dad has the NRAS mutation, not the BRAF mutation, and if a patient is given Zelboraf without having the BRAF mutation, it can cause the melanoma to rapidly spread and can cause death.

"Melanoma is the leading cause of death from skin disease. In metastatic melanoma, the disease spreads from its original lesion site to deeper parts of the skin, and eventually to other parts of the body distant from the primary lesion site.
An estimated 68,130 new cases of melanoma were diagnosed in the United States during 2010 and about 8,700 people died from the disease, according to the National Cancer Institute.
After a long period of stagnation, in 2011 two revolutionary drugs were approved for metastatic melanoma: Yervoy from Bristol Myers (BMY)and Zelboraf from Roche (RHHBY.PK).
Yervoy is a CTLA-4 inhibitor that strengthens the body's immune system and Zelboraf is a BRAF inhibitor.
Since both Yervoy and Zelboraf are cleared for metastatic melanoma therapy, a battle has ensued for dominance in first-line treatment and has stirred considerable debate in the field.
Yervoy is slow to take effect and only about one in four patients respond, but responses can be very long-lasting.
Zelboraf, on the other hand, usually demonstrates a lightning fast anti-tumor response, but it does not last and is often followed by treatment resistance.
Yervoy might turn out to be a better option for patients in earlier stages of disease, when immunotherapy has a better chance for success.
Patients who have aggressive disease or a large tumor burden, however, are not likely to benefit from Yervoy. For them, Zelboraf seems the better option.
In other words, Zelboraf is the drug for patients with a high risk of dying, for whom time is of the essence.
But Zelboraf does have a critical drawback. It can only be used for patients who have the BRAF mutation, which accounts for just half of all metastatic melanoma sufferers. Patients who do not have the mutationshould not get Zelboraf, as data show that it could accelerate their disease.
Yervoy's effectiveness is not dependent on the BRAF mutation.
The FDA has approved a companion test, Roche's cobas 4800 V600 Mutation test, to determine which patients have the mutation.
According to Roche Molecular Diagnostics, testing for BRAF has been ordered for some 80% of eligible patients with late-stage melanoma.
The speed with which doctors have shown readiness to use the BRAF mutation diagnostic test demonstrates how quickly the field adapts to new treatments.
Because so many questions still surround the two drugs, more trials are needed. One trial, co-sponsored by Bristol-Myers Squibb and Roche-Genentech, is underway right now comparing the two drugs.
Administration of the drugs:
Yervoy is infused. It takes about 90 minutes to get a full dose. It is usually given every 3 weeks for up to 4 doses. The doctor may change how often the patient receives it and how long the infusion takes.
Zelboraf is taken in tablets, four 240 mg tablets taken twice a day, approximately 12 hours apart.
These medicines can do miracles but come with a price tag.
For US patients, according to the website, Yervoy cost $6,480 a month (10 doses) and Zelboraf cost $11,055 a month, for 240 tablets.
The diagnostic test will cost around $120 to $150.
These figures do not include doctor's and hospital fees.
Analysts predict that the majority of BRAF wild-type (BRAF negative) patients will receive Yervoy as front-line therapy, allowing the drug tocapture 60 percent of the US market versus 40 percent for Zelboraf.
Accordingly, consensus estimates from Thomson Reuters Forecast lists global Zelboraf sales of $174.1 million in 2012, rising to $641.9 million by 2016.
Yervoy sales reached $154 million in the first quarter of 2012 and sales in the first 12 months since its launch have reached $514 million.
For the first quarter of 2012, Roche reported sales of CHF 32 million ($33.7 million) for Zelboraf.
Several other new drugs are also being prepared for the market.
Glaxo (GSK) had recently presented the phase 3 results of two of their pipeline drugs, the BRAF inhibitor dabrafenib and the MEK inhibitor trametinib.
One downside of the BRAF-blocking drugs is that using them may activate certain growth pathways in healthy cells, leading to non-melanoma skin cancers. It turns out that adding the MEK drug can block the formation of these skin lesions.
Finding out that a second drug can cancel out the side effects of the first "was the cool part," said Glaxo's president. "Usually, when you combine two drugs they increase toxicity."
Approval of the two Glaxo drugs could generate as much as 1.5 billion pounds ($2.35 billion) by 2020, according to Andrew Baum, a London-based analyst at Citigroup Inc.
Glaxo will seek regulatory approval of both compounds later in 2012.
Recently Provectus Pharmacutecals (PVCT) presented final data from their phase 2 clinical trial of the PV-10 molecule, showing strong results.
This is a Rose Bengal compound that has been in use for over thirty years by ophthalmologists to assess damage to the eye. It has also been used as an intravenous diagnostic to detect ailments of the liver.
Rose Bengal has an established safety history, a short half-life in the bloodstream, and is excreted via the liver and kidneys.
The planned international phase 3 trial of PV-10 is expected to include up to 300 subjects with end stage melanoma. PV-10 will be compared with a control arm of chemotherapy with either dacarbazine or temozolomide, with progression-free survival as a primary endpoint.
Enrollment in the 30-month trial is scheduled to begin in the second half of 2012."

Monday, July 23, 2012

It's been a rough day.

So I just left dad's house. He asked me to come out and run errands for him since he is unable to be on his feet today for more than 2-3 minutes. I dropped off prescriptions and picked one up, as well as some gatorade for him. He has lost a lot of weight and doesn't have much of an appetite at all. He didn't want me to stay long and promptly kicked me out after I set his change on the counter. He asked me to come back in the morning to pick up the meds that were dropped off for a refill today. He's very tired, not talkative and he is wanting to rest. He has appointments Thursday and Friday. Thurs he is having his PET scan to look for abdominal/stomach tumors (and all over his body as well), adn after the scan we are meeting with his oncologist to go over those results. 
Friday he is having a new mask made for his brain radiation, as well as an MRI in the brain, and a meeting with his neurologist as a follow-up to the brain surgery. And other than that I have ordered dad to rest lots, stay hydrated, and to call me if he needs ANYTHING at ANYTIME. I met his neighbor across the street, Jim, and he knows about dad's situation so he gave me his phone number and told me to call anytime if we feel that dad needs a wellness check and we can't be there right away. His neighbors and community are so amazing and nice. That's all I have in terms of updates!
I just got remembered that I forgot tell you guys some good news! His leg with the tumor has shrunk significantly! It looks MUCH better than it ever has, which means the radiation is shrinking the tumor!! He was very happy about that. The PET scan on Thursday will show us how much it has shrank since he had radiation on it!

Pics from lunch w/my dad!

Just some pics of my dad, twin sister Kim, and my uncle Tom from lunch yesterday! The first one I had to filter and edit because it was too dark w/out editing it. The second pic is with Kim and my dad and I. The third pic is us with my uncle Tom!

Sunday, July 22, 2012

I've been quick update

I don't really have much to update on. I have had a very busy week, and the last 2 days I have been pretty much drinking non-stop. Not joking. My best friend's birthday party was yesterday and today my family and I went out for lunch and drinks at the brewery with my dad and uncle. When we got there my dad was barely recognizeable. His face is very gaunt and pale, he's lost weight, his eyes look terrible, he only ate a small portion of half of his reuben sandwich. He couldn't hold a coversation and was in extreme pain. The end of his battle is coming and it's very near.
I am taking time to feel my emotions and to deal with them privately. I am extremely hyper-emotional right now which is why I haven't posted anything recently.
I keep watching the same episode of how i met your mother (SPOILER ALERT WARNING...SKIP THIS PARAGRAPH IF YOU DON'T WANT TO KNOW)--the one where Marshall's dad dies and they are at the funeral. It's so real and honest. It makes me feel less alone in this process.
My mom hired a photographer to take family photos of us with him this week. I'm looking forward to it. He is also having a mask made for his new brain radiation again, as well as 3 appointments at ohsu next week. My uncle is flying out tomorrow and he's been a huge help to my dad.
I'm just really not in a good place mentally, emotionally, or physically. The remicade infusions are helping but the stress is causing more pain than necessary.I'm just in a very dark place right now and I need to sort through all of my thoughts and emotions before I can start posting more.I don't want to be the debbie downer in every post I write lol.

Monday, July 16, 2012

Short update about my dad's visit with the oncologist, and his last chemo treatment.

Hello! All of this was written while my dad was getting his infusion. I am too exhausted to re-write it here so I am copying and pasting it here.

Well we just finished talking with his oncologist.
He wants to do another PET scan in two weeks. My dad has been having severe stomach pain and he wants to see if there is any new tumor growth anywhere else, primarily his abdomen/stomach. If there is he and my dad will decide the next course of action.
This is his last Yervoy dose. The Dr said it could take up to two months to see any improvement though. He is very tired and his head hurts from surgery but he has a great attitude. He is also going to see a neurologist about meds for seizures and his hand that moves on it's own, and he should be hearing from his radiologist about when he will start radiation on his brain where the new tumor was removed.
And last but not least if he can stay tumor free in his brain for 3 months he will be eligible for a phase 1 clinical trial new pill for melanoma-but he won't be eligible if he gets any new brain mets in the next 3 fear is that he won't be alive by then :( 

Melanoma is horrible. Just horrible.

Sunday, July 15, 2012


Tomorrow is a very important appointment for my dad up at OHSU. We have to be up there by 9a and he's meeting with his oncologist. My dad is supposed to get his last infusion of Yervoy tomorrow, but I'm not sure if he's going to or not. It is a very major appointment...if they decide not to do the last infusion, that means my dad is literally out of options. He isn't eligible for any clinical trials, nor is he eligible for any other types of chemo. The Yervoy was it. It only has a success rate of about 10-20% so we knew going into it working on him was a long-shot, it's just frustrating knowing that there is nothing else on the market to help him. Yervoy is a miracle drug for patients who can receive it, but we need MORE options for stage 4 patients. It is unacceptable to me that there isn't anything else my dad can take or try. I know finding a cure of melanoma isn't going to happen in the near future, but it seems like there should be more treatment options available to him. It's just extremely frustrating and maddening. My dad did everything right and now he is dying from it. It doesn't make sense. Please send your prayers, positive thoughts and love tomorrow morning. We need all we can get. Thank you.

Thursday, July 12, 2012

I am so angry.

I just wanted let everybody know that my dad is home now and resting. He got discharged earlier in the afternoon and he's very happy to be home! He is having his last dose of radiation on his leg tomorrow morning, and then on Monday he has an appointment with his oncologist. He's also supposed to get his last dose of chemo (Yervoy) on Monday, but since it so obviously isn't working we don't know what the dr will want to do. He is literally out of options--Yervoy was the only chemo he was eligible for due to having stage 4 (with brain mets) and having the BRAS mutation. He isn't even eligible for any clinical trials, ever. This was supposed to be his miracle drug..and now that it's not working, he just gets to die. 
He is on 3 different seizure meds and we are hoping he won't have anymore. His prognosis is still not good even though they caught this brain tumor. He's having some major short-term memory problems that may be associated with the seizure, or it may be associated with the melanoma. Nobody knows. He has been calling me 'Alissa', not Melissa. He can pronounce the letter 'm' with no trouble so we have no idea why he is calling me by that. He's been VERY grumpy and mean today but the RN told us his steroid that he's taking for 4 more days causes roid rage, which is what is happening. I got him home and helped set up his medications so he'd know when to take them and how often. He's not very happy that he has to take so many new drugs, but I explained that they should prevent more seizures, so he seemed okay about it after.
I talked to his wonderful next door neighbors and they gave me their cell numbers so in case I can't be out there visiting, they can check on him if we feel he needs a wellness check.
Overall I am just exhausted in every way possible. I"m extremely angry over the whole mess right now. Why my dad? Why can't he go into remission? Why didn't his fucking primary care doctor find that fucking leg tumor almost 2 years ago? My dad is a good man. The literally best man I've ever known. There are so many other people who deserve to die more than my dad-rapists, murderers, pedophiles, etc. Why my dad? Why do those awful people get to live long and full lives, and my dad has to die before he turns 58? Where is the fairness in that? He did EVERYTHING right to protect himself from the sun and yet he still fucking got melanoma. It's just not fair. Why can't he catch a break? I just don't get it. At all. It deeply deeply angers me and saddens me.

                                      On another note, here is a pic my mom took of us on Tuesday!

Tuesday, July 10, 2012

Just a pic!

Here is a pic I snapped of my dad this morning at OHSU. The nurse made that little hat for him because his other stocking on his head was too tight and causing too much pressure on his incision. His right eye and mouth was twitching when I took the pic so that's why it looks like he's winking. We are hoping the twitching goes away in a few days. Thank you all so much for the love and support and prayers.

Please think of my family before you go tanning. Having a bronzed body isn't worth your life. Pale is BEAUTIFUL and HEALTHY. My family's tragedy doesn't have to be yours. Wear sunscreen, seek shade, wear protective clothing and hats and sunglasses. Do it for yourselves and for your family.

Dad's surgery updates

Dad had the tumor removed from his brain yesterday. Everything went very smoothly and great! It was the size of a jellybean and came out with no problems. He is being transferred off the ICU today and into a regular patient room, which is great! He still has his eye twitch and numbness in his right hand, but occupational therapy is working with him on it and the twitch/spasm should clear up in a few days on its own! Overall a great operation!

Friday, July 6, 2012

Remicade Rundown

Everything went well today! I had no adverse reactions to the Remicade and it took 3 hours! My second loading dose is in 2 weeks on July 19th, and my third loading dose is on August 16th! I am SO exhausted from the infusion, and that’s supposed to be normal. After I post this I am going to go to bed! Tomorrow I should expect some flu-like symptoms, headache, joint pain, fatigue, and that’s about it! I am so hopeful that this medication will be the one that puts me into remission. I felt bad for the RN who had to start my IV and hook up the Remicade bag. Because it is mixed in the pharmacy with other toxic chemotherapy drugs, she had to put on a full length paper gown, as well as a face mask and gloves. The Remicade itself isn't that toxic, but you never know what's on the exterior of the made me a little nervous lol. Everybody at the infusion center today I met was extremely friendly, compassionate, knowledgeable, and nice! I have no complaints, other than the facility could use a little more sprucing up. I had a private room with a flat screen and cable! So that was nice! Here are a few pics from my first infusion! Have a good night, everybody!
Gotta love IV's!

Remicade in all its glory!

After the infusion! Do I look Crohn's-free yet?

Thursday, July 5, 2012

Quick updates: My dad and my Remicade!

I had my first remicade infusion today! It went really well!! It last 3 hours and I had no side effects other than fatigue and a minor headache. My next infusion is on the 19th. I had to go by myself today which sucks, but I had a tv, a private room, and my laptop so it all worked out!

I just wanted to briefly update you all on my dad's Melanoma appointment today. His oncologist and radiologist have discovered that the tumor in his leg (initially thought to be on his fibula in his right leg) is actually located inside of the bone, which is NOT good. His doctors have decided that aggressive and rapid radiation is the best course of action, so Mon-Fri next week he will be receiving 20 mins of radiation at OHSU. This will cause him more pain, more swelling, and it may not work. Surgery to remove the tumor is not an option unless it is an amputation. My dad is also having a chest x-ray done next week to look at his lungs, and he is finishing his chemo on the 16th as planned. Please continue sending us your prayers, support, well-wishes and love. We need it right now. Thank you. 

Tuesday, July 3, 2012

I found an amazing blog I want to share.

I was going through my twitter feed and I found this amazing blog written by a woman who is 25 and has stage 3 Melanoma. Her story is amazing and inspirational, and I really think all of you should read it. Truly amazing. Please please PLEASE practice sun safety EVERY SINGLE DAY. Your life isn't worth losing over a tan. I cannot stress this enough.

Sunday, July 1, 2012

Late Night Musings

I have used this blog as a place to rant, vent, and just write about what was randomly on my mind. I am mostly using it as a way to cope with my dad's melanoma diagnosis, so I can write out my thoughts and feelings in a place where my friends or whoever wants to come and read them.

When I first started writing here, I didn't even contemplate writing for an audience. Sure I send the link to friends, but I never thought my words could reach people. I never once thought that somebody out there in the world was going through the same thing I was, and that they can relate to me. Boy was I wrong! I have had a few people write to me and tell me that their loved ones are dying from cancer, and that they know exactly what I'm going through and that they can totally relate to my experiences.

After I found out my words were reaching people, I thought long and hard about changing what I wrote, and making it solely cancer-specific. But that's not fair to my other friends who read it. Reading about one specific topic in somebody's life can be exhausting, so I am still going to use this as an outlet to share other parts of my life, the good, the bad, and the ugly.

I would love it if everybody who reads my blog to please leave a comment! It doesn't have to say much, I am just interested in who reads them..yes, this means you too, RJ! If my blog has impacted you in any way, or if you can relate, please let me know! It's always a good feeling to know somebody else out there feels the same way I do at times. It is less isolating.

My dad has 4th and final round of chemo on July 16th! He has been kicking cancer's ass and taking names! I am so damn proud of him. My dad has always been somebody I look up to in my life. He's in MENSA, he is very loving, caring, compassionate, understanding, and open-minded. He is hilarious, witty, smart, and giving. Not once has he ever been selfish or mean. Always fair and loving. Truly the best dad anybody could ever ask for. I've never told him these things, though.

As a little girl I would often ask my dad to marry me. Not in a serious way, but in a way only 5 year olds can mean. He always told me yes, then he would tell me I would meet a man someday that would treat me as good as he does, and who would love me even more. I never knew just how right he was until RJ came around. My dad (due to circumstances that were uncontrollable until recently) finally met RJ a couple months ago, and he loved him. My dad refers to him as a son-in-law (shh RJ hasn't heard that yet hehe) and tells me he is very fond of RJ. He says I chose a good man. It breaks my heart knowing my dad will not be there to walk me down the aisle when RJ and I get married.  He won't be around to dance with me, or meet grand children.

I am so proud of how well my dad has been handling his melanoma diagnosis. Not once has he shown an ounce of fear or sadness towards us or his family. He makes jokes and is very honest with everything. He truly is the bravest man I have ever known. It's going to be so hard without him in my life, but I know if he can be so strong and brave during his battle with melanoma, I can be strong while dealing with my grief. I will carry the best of my dad with me in my heart and memory, and while he's still with us I am going to make even more memories with him.