oh, and

I really need to update more, so you don't read into the last post that I am struggling. I am doing so good. 100%, really. Running even. And finding other unimportant things to keep myself busy with. I tried one day to just watch and wait. But that was really boring. No thanks.

the middle of may i

A Mary Engelbreit illustration I just saw and smiled at

Last week I had my last Doctor's appointment until July. They just let me go. I walked right on out. All by myself. Okay! Bye guys! See you then! I guess I'll just...you know...ummm...

What? What exactly an I supposed to do?

When I was given the clean bill of health in September I was ready to start my next adventure. I wanted to get involved in something, maybe volunteer at the cancer center, or start taking pictures again, or move out of the state, or go back to school. Everything sounded fun. But nothing felt right. Something inside said 'Just wait.'

Crazy. It is so obvious now why I kept hearing that.

So...now what? Do we follow through with long term plans? That was about to include moving from our starter home. Why do that if we end up fighting this thing again and I need my neighborhood (best ever) and my kids need their friends? We wanted to move before James hits middle school. Do I uproot them now?

And guess what I wished for in January as I blew out the candles on my 32nd birthday cake? More life. Not more for me (I was sure I had that), I wanted more kids! Online that night, after Josh was asleep, I filled out and sent an application to adopt four kids from the state. I wanted all of them. I woke Josh up with questions about what kind of vehicle we could fit everyone into and how soon we could purchase it. I was so excited! My first thought when I got the phone call that cancer was back, was that this would be the end of my more kids dreams. Ouch!

I could go to school this fall, or take classes at least. But would this be a waist of time? A job that takes me away from my kids, even for a couple hours a week? Is it worth it?

And then if I just have fun and do whatever I want (what I'm leaning toward), am I distracting myself from reality, or focusing on it?

I know I have to live with no regrets, now more than ever. The question is, what would I regret spending my time and efforts doing?

Maybe one of my biggest regrets is just not enjoying the stages of my life, I mean really enjoy. Too worried about what people thought to enjoy High School, too stressed out about grades to enjoy college, too much anxiety over every hazard to enjoy my babies.

Wouldn't it be sad if I was too worried about something that might happen to enjoy everything that actually is happening?

And so, I try to enjoy this stage, as uncertain as it is. There are hundreds of really great things about right now. There are hundreds of questions too.

With some of my big plans put on hold, I am trusting God sees the bigger plan. But if I could just get a glimpse!

mother's day madness

Funny how on Mother's Day, I just want a break from being one. Josh has been out of town all week, and has been working long hours lately. So although I heart being a mommy, it's lovely to have a little break every now and then.

Saturday I took the boys to see the new documentary African Cats. I used to never cry at movies. But now all it takes is a birthday card at Target to get me started. Pathetic!

These cats though! What a great illustration of a mother's love. Their instinct to protect their babies from harm is fascinating. The same thing is inside me, so strong.

Of course I would be sadder than anything to leave this beautiful earth, but the thought of leaving my dependent boys is the one I can't cope with.

And that is the trick when a mom has cancer. Mothers wipe away tears, not create them. It is exactly opposite of our intentions.

We do everything we can to avoid giving our kids 'issues'. Potty train them at the perfect age. Talk about food in just the right way. React just so when they get hurt. Strike the right balance between work and play. Intervene just enough during fights. Give them the right amount. Keep our expectations at the right level. Etc, etc. And even though we aren't perfect at these things, dang it, we give it our best.

Give them issues? I've really got the potential to now. Die before they are old enough to make it on their own. Yuck, yuck, yuck.

As I watched the cats care for their cubs, I thought about my sister. Which is a whole different circle of thoughts that is hard to get out of. This week they will remove part her son's leg as a step in his cancer treatment. Really? Cancer in your child? How do you wrap your heart around that one?

Cancer,

I want to stay up all night, perfectly still, and waiting in the grass, and plan my perfect attack, and execute. I want to chase you down, and roar and hiss, and claw, and rip whatever keeps you alive out, with my own canines, and drink your blood in one furious gulp. Cause guess what? You are in my territory. And there are kids in the burrow behind me. And every instinct of movement I was born with is perfected by knowing they are there. And every muscle I have moves for your death. I don't care how big or small you are, I hunt and wrestle you to the ground. Strew your best parts all over the grasses, and eat them before they get cold.

Seriously,
Alisa

A mother's love is desperate, and powerful, and perfect. It motivates me everyday to be strong. There is nothing I wouldn't do for my boys. And right now they need a mom who wakes up with a smile on her face, and gets them off the school, and reads with them, and cleans their clothes, and makes their dinner, and remembers their homework, and drives them to scouts, and laughs at their jokes.

But this is easy, I want a fight. ROARRRR!!!!

amen baby

Feeling super good. I can walk, touch my toes, stay on my feet all day. Today I rode my bike to the park. And the wind was in my ears! Sun on my cheeks! Happiness!

We are pretty much back to the normal routine. Which doesn't feel that normal. I am not saying it's a bad thing. I am just saying. Still the same alarm. The same breakfast. Same carpool. Same shirts in the washer, out the dryer. Same legos on the floor. Same homework. Same practice. Same bedtime routines.

Different...Atmosphere? Background music? Perspective?

Same characters. Same setting. It's the plot that changed I guess.

Different prayers for sure. Tonight my 5 year old prayed, "Bless everyone that has cancer or anything like that." Pause. "And help us so we don't, like, die."

just keep swimming. just keep swimming

There are a hundred things to say, but with only a few minutes tonight dedicated to the blog... Thought I needed to update and make sure everyone knows I'm okay. The last post may have been a bit of a downer.

Things are looking good. Other than keeping my leg up at night, I am able to do just about anything. The only thing I am having a hard time with is sitting for a long time, and that will be taken care of when I can wear my compression stocking again. All the sutures and staples will come out tomorrow and I will only have steri strips left. Yes! I put some boots with heels on this weekend for a date and walked with no limp! I am sure the limp is a nerve thing that I just need to figure out.

This journey is often described as a roller coaster. My nephew Steven was quick to point out some major differences. But I think it's pretty accurate. The best imagery I can think of is John Lennon's lyrics, "pools of sorrow, waves of joy." Sadness and happiness at the same time, over the same things.

But see now I sound gloomy again. I really am doing great. I feel like I should be depressed, but I'm not. Who knows what a year of 'watch and wait' is going to do to the psyche. But for now I'm fine. Happy, even.

A small miracle. One of many.

longest post ever. needs editing.

Well, just as I was afraid of. Luckily I was prepared. Dr. says they discussed all the immunotherapies, radiation, and clinical trials. They think the best is just watch and wait. Scan again in July.

Well, there you go. One of my what if's: I won't be sick this summer.

Here goes my months of research into one brief (maybe not) post. I am actually going to use statistics from one paper that looked at stage lll melanoma patients that had recurrences (cancer came back after initial treatment). They looked at patients at Sloan-Kettering Memorial Cancer Center for 12 years. Published in 2010. The data seems consistent to the other studies I've been looking at.

At stage IIIc (me), chances of this cancer not coming back in 5 years is 11%. In the unlucky 89%, over half see the disease again within a year. The other half almost all will see it within 2 years.

They estimate 5-year survival for someone who relapses at a stage IIIb to be 20% (that would be me, now as I was a IIIb and had a relapse). If you relapse at a stage IIIc, your 5 year survival shrinks to 11% (don't want that to be me, ever).

And we aren't going to do anything about it? Not really. I did have it removed, which could provide a cure (in 11%). I have already done the one treatment approved for my stage (interferon, 3 years ago). It is supposed to help about 10% of the patients who take it. I think it did it's job for me, as I should have seen this years before it came back. But yes, they do not think I should do any thing other than scans and 'close observation' for now. Melanoma is very resistant to traditional chemotherapy and radiation.

We do have some things, but not many, and they are so toxic, why not wait till we need them? Asks the Dr.s.

I have 2 major options to try if it returns. One is the biochemotherapy (an immunotherapy plus chemotherapy). It helps about 15% of those who take it, cures about 6%. You can tell you are a responder if you have tumors to watch. If you don't respond you get off it and try something else. It is a very hard and toxic treatment. If this helped in earlier stages I think that it would be something they did, but it's kind of like you are either a responder or not. Whether you respond now or later shouldn't matter. As my Dr. put it 'you don't want this stuff, it makes you sick as a dog, and you don't even know if it's helping.' There are a few places around the country who do this with stage III patients, but they are not the big, most respected cancer centers. And I totally see their point in not offering it to me now. But you know how I would just do anything that might help. If they were offering this as an option I would do it in a heartbeat. This is why I'm sort of glad they are not giving me options. I would choose to give up my perfect health right now (minus a limp) and puke in a hospital room for 5 days, come home to recover for a week and half, back to the hospital 4 more times. All for maybe nothing.

The Yervoy I blogged about would be the other drug. This is reporting to 'cure' 10% of the patients. Severe to fatal side effects in 12% of patients. They are studying this drug on stage III patients right now, so we will see what those results are. I don't qualify for that trial because I have been treated with interferon before. If I turn stage IV this would of course be tried, and then again, I either am a responder or I'm not. Scans would show if this is working, and if it does they can keep giving it to you, unlike biochemotherapy where if you fail you are done.

There is another drug on clinical trail, the BRAF inhibitors that are having great success (but they are having a hard time keeping long term responses). As I read on my type of melanoma (spizoid-type), it is unlikely that I have the mutation you need to have this be effective. This was a depressing discovery.

There are always new treatments through trials. In a year the vaccine I was hoping to get might be approved. They are thinking a combination of the new drugs might be the answer, so there are many things in the works.

I admire people who can look at this and say 'Don't look at statistics! Your not a statistic!' Shoot, I don't know how to ignore them! They have my full attention. I do believe I could be on the good side of the statistics. But there is that other side that is so much bigger. 'They' also say 'We could all get killed in a car accident today!' But you would never get in that car if you had a 20% chance of getting there alive. I think even 'you' would be paying attention to those statistics, if 80% of everyone who drove ended up pancakes. Pretty sure we would be walking.

People are startled by the way I talk about it. But that's the way I feel about it. I am so sorry, I don't know why God would give this kind of disease to someone who is so realistic. Who believes science (except physics). Who has seen good people die of bad diseases. Who's faith I guess is not perfect.

And yet somehow I am full of hope.

Hope is just a little different around here. It is evolving. Maybe into what it should be.

I hope that I am cured. I hope that this never comes back. I hope that I am done with this trial forever.

But that isn't enough. I have to hope that no matter what happens, God will take care of things. That in the end, everything will be okay, no matter what the outcome.

I have to add that to the things to hope for, because I will probably not live as long, or have as healthy of a life as I want. I hope not. I pray not. But I can't say I will not, because chances are....

*****

For months now I have not been able to enjoy a novel (until this week). I have been reading medical journals. I just don't have the attention span for anything else, even full-length movies. But I have loved my poetry books I can pull out when I need to get away from the computer screen.

Emily Dickinson I am really enjoying. One of me favorites (it even uses the word extremity):

“Hope” is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -

And sweetest - in the Gale - is heard -

And sore must be the storm -

That could abash the little Bird

That kept so many warm -

I’ve heard it in the chillest land -

And on the strangest Sea -

Yet - never - in Extremity,

It asked a crumb - of me.

indeed

The Doctors agree: Watch and wait.

No chemo. No radiation. No trials. No choice (this is a relief).

Tomorrow I will write up a little of why this was the decision. And what exactly we are watching and waiting for...