my better (or worse) half

Thanks to Josh for saving the day! The only person I wanted to talk to yesterday came home early and dropped by the flower shop on his way. The lady asked what it was for as she tried to help him decide what to put in the boquet. "Is it for a birthday?" "No..." "Anniversary?" "Nope..." Awkward silence. "Just a bad day, I guess." "Oh, I get it." She probably thought she was making up something for an unfaithful husband as he tries to make amends.

Josh won't really let me talk to people about how he is doing, so I thought I would write it up for all our friends and any random reader. Kidding. I won't give details. But we have been talking about how this has worked for us this last month. If I am down he automatically kicks in to hopeful/helpful/happy mode, and if he's down I have to be the opposite too. Moods change daily and even hourly, but one of us is usually okay. Lately he has been the okay one (as my last post might suggest).

At first, I was all hope and faith, while he had a harder time. This surprised me, as last diagnosis he was never doubting.

When he was so sad I tried to figure it out. "What is it that is bothering you? Is it the financial aspect of it all? Is it that I will gone for treatments, or sick all the time, and you will have to take care of everything like last time? Is it the possibility of being a single dad? Raising these kids by yourself? Alone every night when the kids are asleep by 9?"

The perfect answer? "No. I'm not worried about any of those things. I can handle all that. It's just the thought of you leaving."

Holy Luck of America, I got a good one!

and all the skies are grey today

I just got got a call from the Dr.'s office letting me know I have been approved to take part in the trial. Although I was assured that we would be able to start injections this week, there is no room in the cancer hospital for me until Monday. Monday at 4 is the earliest we can start. They can't do the randomization (to see if I get the vaccine or the other drug) unless I can start injections within 24 hours. So I won't know till Sunday night if I even get to do the vaccine. I have surgery scheduled for Tuesday in case I get chosen to the other arm of the trial.

I have been praying to just get this over with. Prayers, temple, fasting, swearing. None of these are giving me any speed here. I never imagined I would have to wait another weekend! I tried everything today! Bawling over the phone, begging on my knees (I guess they didn't see that), having my cute 5 year old talk a little louder so they might take pitty on this MOTHER. I even sicked Josh on them. Nothing.

Pretty sure I could pull off a STAT trip tonight to Italy, but can't get a bed in a hospital 15 miles away until Monday?

I realize the perfect situation would have been a faster approach. But second opinions seem always to be a good idea. It takes a week to get into anyone, and then they tell you to go to someone else, etc. Scans take a week to get scheduled for. Then we find things on them, then I change my mind. Days turn into weeks, and weeks into months. I asked one surgeon to just take the dang thing out and then we can decide what to do, and he said don't take it out without a plan. I was refurred to MD Anderson by a dertmatologist, they called and said 2 weeks until the appointment, and then you have to have the workups etc. We would be looking at 3 weeks out to get into anything down there.

Obviously if there were a clear cut, great option, I would be well into that. With such poor response rates to current treatment, it is not all black and white.

It could be worse. I didn't have a dermatologist appointment until 2 weeks later than the day I had the first metastasis removed. Thank you to my endocrinologist!! I would have no idea this thing was going on inside if I wouldn't have had that little spot growing on my leg. Thank you small wart-like lesion! I can feel the tumor in my leg if I press really hard on just the right spot. I would never come up with that if I didn't know where to look. And I was NOT looking for cancer. I was cured, remember?

Look, if this cancer is inclined to stay in the leg, it will do just that for a while. If it has decided to break loose, it is probably in the system. I am putting my life in the hands of this Dr. and I don't need to be told things are going too slowly, because trust me, I know. I want this thing resolved pretty bad. I have to wake up to this nightmare every morning. And all I've had to battle this Beast is asparagus and berries?!! Worst weapons ever!!!

This has taken every ounce of strength of mind I have. And I am running out.

When you come over to talk to me about it I may ask you to cut the dang things out with my bread knife. I will tell you this situation is driving me crazy and I can't believe I'm not is some cancer ward puking my guts out. But please don't diss my Dr., because that will not help me heal. Let that anxiety be mine. It's kind of like how you can complain about your mom, but no body else can. (Not you, mom). I am putting my life in this guys' hands. All the opinions pointed to this Dr., and no one would be happy unless I was in his care. Well, this is what he is telling me to do. He is the best out there and I really like him. I have to trust him.

Sorry to ramble. I feel like hiding under my sheets and never coming out. I'm sorry I'm not answering the phone or door today, I can't take it. I suppose I'm in the depths of despair. Plus I'm angry. Two horrible feelings.

run, peter, run!

My sister and I remember a story we heard as teenagers about someone who had cancer and would imagine his/her T cells attacking the cancer cells one by one, I believe with an ax.

My guided imagery? The cancer cells are weeds and I am the gardener. On my knees, bent over, uprooting every little unwanted bit of green out of the immaculate bed I am keeping. Armed with spade and hoe. Round Up and Diligence. Checking my rows again and again for anything that is not meant to be there. Looking over my freshly turned earth at the end of the day with satisfaction. Wiping a bead of sweat under my wide-brimmed hat.

Now that I realize I am going to have to fight this thing using my immune system, the Garden Warrior is obviously weak-sauce. No hard drugs to come in and kill this thing, just some help to get my own system to attack. I have to get it from the inside out. I need a stronger superhero. Someone a bit more intimidating than Mr. McGregor. Hmmm...

I am excited to see what they are going to tell me about the FDA approval of Yervoy. I think it sets up the perfect plan for me. Get the vaccine injections, which are supposed to get the virus into the cancer cells, telling the immune system to attack it and the cancer cell it has invaded. I think I have built a tolerance to melanoma, and my body is no longer recognizing it as foreign. The vaccine should change that. So the body tags all the cancer cells in the body to be killed. I do this for a while, and then get the tumor removed (it will be dead in my case). Then we start the Yervoy, which blocks the cancer's anticancer immune response and all hell breaks loose on anything left inside because those cells are already tagged to die. It never comes back. I am saved forever. The end.

yervoy

All over the news today: the first drug in like 15 years to get FDA approval for treatment of late stage melanoma. Does this mean something for me? I am finding out. It may only be approved for stage 4 patients.

http://www.nytimes.com/2011/03/26/business/26drug.html

Exciting day in the melanoma world!

try

You might just want to tune in next month to see what I really end up doing. It's changing all the time. The decision has been hard. I have made it, and then something comes up to make me think again.

I've had all this fight and no direction.

No decision is a great one at this point. I had to come to terms with what I'm dealing with here: late stage melanoma. It is what it is, and no one is going to tell me they have a great treatment. I just need something. I am going to give the vaccine a try.

And it's not because it's the easy way out. I'm telling them, "Amputate the dang leg! Pump into my veins the hardest chemo you have! Burn the entire body with radiation! Everything, and all at the same time!" None of this really works though. Different cancers respond to different treatments. Melanoma is not usually cured with any of these things (even amputation, trust me, if it worked they would do it). Some of those things can help, but the things that are working are immunological drugs. Finding a way to get the immune system to kill the cancer.

I should mention, melanoma is very curable if you surgically remove it before it invades other parts of your body. Once it metastasizes, it gets tricky. I'm not in the really tricky category (stage IV). Thank goodness!

This trial injects a modified herpes virus directly into your tumor every two weeks. They use an ultrasound to see where to put it and if it's responding. It replicates in only the cancer cells, killing them and sending off an immune response throughout your body to kill other cancer that may be lingering, or even other tumors far away from the one they are injecting. It's a good idea, but will it work?

The last trial was a Phase II and only had 50 patients enrolled. The results were good. Great for some people. I liked this article, http://oncolyticvirus.wordpress.com/2010/09/16/will-biovex-cure-melanoma-with-its-oncovex-oncolytic-virus/ which shows its response rates compared to the 'gold standard' proleukin which is part of biochemotherapy. There is a low response rate to biochemotherapy, but some people are complete responders (according to this article 6%) which means it gets rid of all the disease. For those complete responders they live a median of 5 years. So response rate is low, but is very effective in some people. They are claiming Ovcovex has a higher response rate, and a higher complete response rate.

The Oncovex website is: http://www.biovex.com/oncovex.html The results look promising for sure. I am a bit of a skeptic.

There are some things I don't like about the trial. The control arm for one. It's a drug that has been studied in patients who have had their tumors removed. It was found to lengthen time of relapse, not change overall survival. It has not been tested in people with active disease. There is a 1/3 chance I get randomized on this arm and if so I think we go back to surgery. We will know early next week.

This is what the 2 melanoma specialists have said they think is best. They say as soon as we see it's not working or we are uncomfortable with what is happening we drop off and take it out. But what if it works? This could be great.

And so? We inject.

And then? We wait. We pray. We hope. We take nothing for granted. We praise God for all he gives. We celebrate every sunrise. We give reverence to each sunset. We concoct green drinks. We eat salads full of veggies. We don't look back.

And then....we rip those tumors out if they don't respond. And we try something else.

And that is how we do it.

Maybe.

PET

Good news! The nodes did not show cancer on the PET scan done this morning. There is just the growing cancer in the thigh area (the two tumors). I am on the surgery schedule for Friday. So excited I won't have to do the groin dissection surgery that I did last time. It was such a long recovery.

The Dr. still wants me to consider the vaccine trial. I have till Wednesday to decide for sure. Dr. says standard of care at this point is surgical excision or clinical trial. I am trying to tell him I have higher standards. It's not working.

So, camp decision again. This is so confusing.

Kind of funny that I am giddy about two tumors! Perspective, I guess.

and again, changes

We couldn't do the PET scan today because it takes 24 hours to get the radioactive whatever they inject for the scans. Not too dissappointed, as I think we wouldn't be doing surgery until Tuesday at this point anyway. Still, the sooner the better.

But I don't have time to throw a pity party for myself. The waiting game is just something I have to get used to. I can choose how to deal with it.

I feel great right now. I have a whole weekend with nothing scheduled. The sun is out. Good enough.