CANCER SUCKS no matter how positive of a person you are. It SUCKS in the sense that it messes with your mind, it messes with your family and as much as we are receiving wonderful news, this whole thing has put a tricky kink on our family. We go from highs and lows in one day pretty often. This last month of being in limbo and not knowing has been beyond tough... The FOOD CALENDAR has been a blessing and I can't tell you how much it has helped knowing I don't have to clog my brain with that. Everyone contributing monetarily, or by food it means the world. The good news is there are organizations and good people to help make those unbearable feelings feel a bit more bearable. I recently stumbled across a cancer magazine that I subscribed too. I recommend it for anyone of you that knows of a person going through this beast. Knowing people in your same situation makes you feel comforted and not so alone or crazy in your thought process. Here's the link to the magazine: I want to help others as much as I want to help myself.
Another wonderful organization we stumbled across is CAN CARE. Someday I hope to be one of the volunteers and also hope to volunteer down at MDA. Here is their website:
Now this organization was another serendipitous stumble. I was getting my teeth cleaned at my dentist, Dr. Hunsaker whom I adore and was referred to me by our pediatrician, whom I also adore. Like I said good people surround us. Anyway, her cousin happens to be the CEO of this Can Care org. and she gave me the info. I'm so glad she did. I got linked to a wonderful lady, a melanoma stage 4 cancer SURVIVOR! I have been in contact with this lady a couple of times through email and plan to meet and begin a life long relationship. She's a GEM! It is so very important to not hide your true emotions and just be honest. It's OK to have bad days and it's OK to admit you don't like your moods. It's going to happen and all we can do is do the best we can.
When we found out we were going to begin BRAF Treatment we were elated... A PLAN then comes the fine print. With Melanoma or any Cancer there is always a fine print. "Watch your body carefully, it can cause rash, warts, extreme photosensitivity to the point where I will need to purchase special clothing and need to be VERY careful in the sun even for 10min. Oh, and it can cause skin Cancer... Did I forget to mention that....I thought to myself...SKIN CANCER? Don't I already have that? lol Can you hear the irony?...
Here Jen, take these pills, it's a miracle and one of the reasons "It's such a great time for Melanoma"... Don't worry one of the side effects is that it can cause skin cancer? HUH? Don't worry, it totally makes me laugh and I'll explain... but have to hook you or you won't read, eh? HA! HUMOR is IMPORTANT! Ahhh, the world of Melanoma, why do I know you so well? You are a tricky silent manipulator. You know what though... you can keep trying, I'M going to BEAT you. The reality is yes, it can cause squamous cell carcinomas which can be removed by cutting them out or melanomas that can be cut out but the chances of it going further than that they tell me are slim. I may just lose a chunk or two, grin! This drug is so new, I'm relying on FAITH. FAITH in GOD, FAITH in the DOCTORS., and FAITH that I am at the #1 Cancer Institute in the country and my medical oncologist Dr. Kim was one of the people that helped get this drug FDA approved. That is lucky. I am lucky.
TREATMENT IS HERE...IT'S TIME TO BEGIN!
I apologize in advanced...I jump around, it's just what a do, lot's to get out of my brain. The one commitment I promise to make to myself and to you is I won't sugar coat anything. The only way for me to help myself and others is to be HONEST. HONEST here are...NO HIDING HERE!
About the drug...
Trust, me at the moment a MUCH better option than BIO-CHEMOTHERAPY and it's DEFINITELY NOT Interferon... PRAISE GOD!
Here is the background as to how we decided it was time to begin treatment. All was going along well and my body was doing it's part and shrinking those darn tumors on their own after my hormones regulated, but I was beginning to have SEVERE HIP pain and pain in my back that was beginning to become debilitating. On Monday when I went in to see dr. Kim I need a wheel chair to walk and get up to clinic. That is not good. The scans showed that some of my metastasis were still stable if not smaller, but there was one in a lymph node close to my heart that was larger and the ones in my pelvic area were larger... hence the hip pain. Pain causes anyone to be grumpy and snappy. I admit that was me. I was in this outer shell of looking normal with an incision by the panty line that is still popped open and in need of special wound care, and radiating pain all down my left side. None of this you can see and geez it gets old to tell my predominant care givers Jeff and my mom that I'm snappy and in pain. They are getting the brunt of my moods which makes sense because we all do it and it's the only place I have to fall into open loving arms, but I will say it was beginning to take it's toll on both of them. I'M SORRY.
It's hard to watch the stress on their faces and know why it's there and then still snap because you hurt (PHYSICAL PAIN). The caregivers in this whole scenario need help too. They need ribbons and acknowledgement and breaks like the one fighting. Last week was a hard week of living in the grey and no one really knowing what their plan was or purpose was. On top of it all, Zachary was sick so that in and of itself is enough the want to just fall apart. Last week was tough. On Monday, we made the dec. to start because once melanoma decides it's time to spread, IT'S FAST and takes on a mind of it's own. We didn't want to lose site of progress. We are one of the lucky ones that insurance covers the drug. Without our insurance we would be looking at covering $12,000.00 to $13,000.00 a month out of pocket! Holy GEEBERS! Liquid GOLD, I better not lose this stuff as the ins. company won't replace it obv. and missing a dose loses the effectiveness.
I started doing the math...I take 4 pills in the morning and 4 pills at night, we are looking at $400 a day, $50 a pill to take this drug. INSANE! We are lucky to just pay a $50 copay. Thank you KPMG! I asked Dr. Kim how long I will be on this drug and the answer is they don't really know....Until it stops working. Let's pray it keeps my melanoma manageable for a very long time and I can adjust to the side effects. It could be a lifetime of chemo. My condition like I have mentioned before is chronic. I will do anything to see my son get married to a wonderful partner in crime like I myself have found. Some people, the drug stops working after 2 mo. and some people it's still working after 3 years. Time is what we need. Time=more research and more options. If this was my diagnosis in 2006, I wouldn't be sitting here typing. I would be DEAD as my only option was interferon. In 5 years there has been amazing advancement. After BRAF stops working there is another drug to try called:
This is also new along with the TIL treatment.
My condition at the moment will be called chronic until there is a cure.....I pray that I live long enough to be part of the world where MELANOMA has a cure as easy as the chicken pox.
As for the protective clothing part of treatment, here are some sites that were recommended to me:
also look for upf 50+ clothing at REI, Academy, and Whole Earth Provision
They told me that sunscreen provides a false sense of security and that I really should be wearing UV clothing...
As for the Zelboraf, did you know that there are only 12 Pharmacies in the entire USA that have the drug....12, ONLY 12 and MD Anderson is one of them. LUCKY AGAIN.
I'm full of information today. Here is another discussion forum that has been tremendously helpful in a positive way regarding the less bleak outcomes of melanoma you read. This site has been another site of hope and answers from REAL people battling this disease and a place where I can post questions if I have them. So Important!
I'm about 2 days into treament and I can tell you that I wake u very nauseas in the morning, but not like Interferon and I'm not in the hospital. About an hour after the dose, the body aches start. Tired...YES, joints achie...YES, Nauseas...YES! However, it's def. not Interferon and so far with BRAF treatment I can be functional with limits. I'm going to need to learn how to pace myself and learn my new normal. Moment to moment, YES.
Again manageable, but def. don't feel wonderful. I do get headaches, but find that pain medicine does make it ok. This drug is something I can see I can live with, but I will need to pace myself. I'm not sick, sick, but def. need to pace myself. That component will be a challenge for me. Again, it's another GREY and I'm learning a new normal. I'm operating, but I'm operating on a 1/2 tank of gas with a desire to go full speed ahead. I'm thankful Zachary has a consistent school environment he can go to so I can take care of myself. Thank you Jenny :-)
Here's how I choose to live and will leave you will some facebook status updates of mine that tell a bit of the story.
I LOVE this that I read from a friend's post today: Be the kind of woman that when your feet hit the floor each morning the devil says "aw crap, she's up!"
I need to surround myself with wonderful :-) this is a good start and gave me a chuckle. Laughter heals the soul.
Looking for my sense of structure/routine? Anyone seen it? Feeling completely out of control of most things. Life is on super speed with too many moving parts and urgent matters to tend to. Slow down please a please provide me some energy :)
GREAT advice from a Ron, the hubby of Catherine who is fighting this beast right along side me:
"Remember sweet Christian sister of mine, we are only passengers. Quit trying to drive the train."... This is so well put and something we all could use to steer our ship.
(I ask that all you praying for me, Pray for Ron and Catherine's family. They are fighting this beast and need some relief from this horrendous disease immediately. Please say a prayer and send positive thoughts their way too)
OK, Zelboraf...Time will tell! Let's see what you've got! Love you all my friends and family... today's post was a long one. I hope it left you informed and with some good tips/advice to help others you may know in a similar situation.
Until Next time....JEN <3