Yesterday was quite the circus when I write down all that transpired, but in reality the timing of events really wasn't that bad. Jeff and my Mom made what could have been a stressful day really rather ok. Here's the play by play. So, Jeff drops me off to go get my chest x-ray and he was fully prepared to go check me in at the dr. because really all we do is wait. I get done with my chest x-ray I call Jeff to see where he is in line.
Well, he never made it up. Right after we dropped Z off our Explorer started steaming and immediately Jeff knew we had a big problem on our hands. It appeared to be the radiator hose and if he drove it anymore it would have ruined our engine. Thank goodness he was with me and thank goodness we were not on the freeway. This is the thing about timing that I see as lucky. Now, Jeff parked the car and called a tow truck. I was supposed to drop Jeff off at work after my appt and well that didn't happen. So much for trying to keep a normal routine, but one thing we have learned in all this is to go with it. I am proud of the way we handled this and I will say I wouldn't have been as calm if Jeff wasn't with me.
Now, at this point we knew we were stranded. This is where Grammy comes into play and we are so thankful to have her here. At first she wasn't reachable so I called some neighbors to see if they could go knock on our door at home, but eventually she picked up her phone and we learned she was outside. This is the part about my mom that just makes her special. She as in no shape to go anywhere, but through on some clothes tired and all and drove our other car down to meet us with zero warning. Oh, what would I do without my mom or Jeff. Not really sure. Anyway, Jeff ended up going with the Tow Truck guy and our car to the repair shop and Grammy was able to drive me home. All and all it ended up working out and we managed to finish my doc. appt, get lunch, and meet Jeff with a rental car and carseat removed in time to get Z from school....phfew...like I said, it could have been a lot more stressful and I'm glad it wasn't.
CATASTROPHE AVERTED..........
Ok, here's what the docs said. The tumors on my lungs are still stable as shown by the chest x-ray which is good, but the hip pain is causing him to want to order more tests. We do know we have tumors in my pelvis area, but what we don't know is if they are growing. What I do have that is different is terrible pain. Thurs. I will be down there for blood work, MRI of T7 (spine more localized) and MRI of my hip. Friday I have a CT scan of chest abdomen and pelvis to check to see what is going on with what I call my "juicy organs" like liver, stomach, intestines etc. We will meet with Dr. Kim again on Monday afternoon and see if putting off treatment is still in the cards or whether or not we proceed with something.
What has changed since last time is the fact that the pecking order as to what treatment will be used 1st now is no longer Bio Chemotherapy. If it appears that treatment is necessary due to tumors growing again, we will start BRAF. The hard thing to stomach about BRAF is this is a regiment that I will have to be on for a very long time if not for LIFE. That is a little unsettling to say the least, but will do anything. The side effects are supposed to be less, but it's not something that ever leaves me. I would take 4 pills in the morning and 4 pills at night. 58% of patients show considerable shrinkage on this drug but they can't guarrantee it gets it all and those that discontinue the drug have been shown to start metastasizing again. I won't know what my side effects will be until I go on it so just have to wait and see.
The other option for me is say, nothing on the scans show tumors growing from before then I may have some localized radiation treatment to my hip and spine to help try and eliminate some of my pain. I do not like taking so many pills, but it is necessary for me to funciton normally without pain. I'm still doing all the positive meditating, visualizing, and praying which in this all is what keeps me sane. Again, I will know more Monday afternoon.
I do know that the life I have is good and aside from Melanoma (and a small encounter with this flu virus for Zachary and myself this week) I feel healthy and happy. This is and probably will be my life for a very long time and the way MDA describes my condition to me is it is like anyone dealing with chronic illnesses such has high blood pressure, diabetes, etc. Do I like that I have this...NO; however, it is not going to stop me from living life fully and happily.
I have been in bed most of the day trying to shake this flu and Z has been in and out. It's hard to get a 3 year old to realize he is sick when his fever breatks, but he does still go in and out of fever so I know he will be home from school at least one more day. He's sad he's missing his 1st day of soccer and all I want is our family to get to feeling better. Sick isn't fun no matter how young/old you are.
love you all,
Jen
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