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...

take a picture of your life. remember what it looks like, before it all changes.

This is the fam April 2010 during Spring Break. The boys came to snuggle in the morning and Josh and I were thrilled to still be in bed at 8. I had to have a picture of how good it feels to be sandwiched between all those sleepy bodies.

Have you heard that quote before? I don't know why I keep thinking "A year ago...." I guess because things can change so fast. And maybe, if they can change for the worse, then they can change for the better?

It's been a pretty low-key spring break, but thanks to grandmas and the neighborhood gang, the kids had a great time. I spent a good portion studying biochemotherapy, which is what I'm hoping I can get after I heal. I don't know, I see why they wouldn't do it yet. But I can't help wanting to do something. I see the Dr. Tuesday for more staple removal and discussion.

Drain was pulled yesterday and I walked around Target today with no problems. Crazy how much improvement there is every day.

Awesome body that can heal itself so well, kill the dang cancer while you're at it please!

willn't

The Dr. appointment today was less than exciting. He said he will talk to the board this Thursday about me. He said my leg is healing up great, and that I should get the drain out this week.

Today's mantra was "I surrender to Hope." I don't really know what this means, but it sounded right this morning when I opened my window to purple bulbs, next to green grass, in front of snow-covered mountains, under a clear blue sky, holding a bright yellow sun. And in the background the singing of birds, and the echos of kids. Spring at last! And all It's influence!

I believe I have purple hair here and semi-symmetrical legs.

Last night my five year old asked if they cut my cancer out all the way. "They got all they could find. They just worry because it might come back." "I think it willn't come back." "Willn't?" "That is a word you make when you put together 'will' and 'not'."

Iloveyoulukemorethananythingeverintheworld. That is the word you make when you put together what I feel every time I look into those dang cute, dark brown eyes.

If will has anything to do with this....

cancer is not pretty

I'm reminded of this every time I look down. This isn't even half of it. Sure glad I got over having gorgeous legs last time around, cause this incision just keeps on going. Up to my hip. I know my nurse friends will appreciate this photo. Note drain sticking out of nowhere sucking up blood. And large suture (there is another further up) holding the dang thing together, otherwise they say it is so long the staples would pop right open. Yuck.

I have very little pain right now, and some more nerves must have been cut as I have no feeling in the knee, and I wonder if that is why I am limping. I am not even taking Tylenol as regularly as I should be. I am just supposed to keep it elevated as much as I can to keep the swelling down.

I told my 5 year old he was going to have to wash his hair all by himself in the bathtub the other night because I couldn't bend down to help him. He looked at my legs. "Do you have cancer in your other leg?" "No." "Well, then you can just hop on that leg to the bathroom and bend down with your cancer leg strait in the air." This is something I hadn't considered. I guess I have no excuses.

Cancer survivors usually have to live with some sort of after effects from their treatments. I developed lymphedema in my leg from my last surgery. It is essentially chronic swelling caused by surgical excision of, or radiation to, lymph nodes. It is found mostly in breast cancer patients in their arms. I was so devastated when I was diagnosed. Don't google it-the pictures are terrifying. I have taken very good care of it, wearing a compression stocking every day, wrapping it with bandages occasionally, and exercising. I really had it under control. You would never know. I always wear pants and long skirts. It was a hard adjustment. But I made it.

I talked with a girl who had cancer in her leg as a teenager. She is unable to pick up her leg (like to climb a stair) from her surgeries, and walks with a slight limp. I really enjoyed our conversation. She understands what it feels like to be told "it's a small price to pay for your life!" Which is true, so true. But sometimes that price seems big. After all, it is a part of you. And it's forever. Suddenly you are different. Different than everyone else, different than you were. Even if it's just the ability to wear capris, high heels, or go around bare feet. You still grieve the loss of how things were. And for a lot of us, how things looked.

But trust me, right now I do not care how things look. My vanity burned up long ago. I just need this leg to heal!

Loved the scripture I read this week saying He shall arise "with healing in his wings." I wouldn't mind some sort of swoopage down right about now.

lucky me

They didn't find cancer anywhere else. Great news! The Dr. is recommending just watch and wait. He will take my case to 'the board' with the oncologists and other melanoma surgeons and let me know Monday what they say.

I know it is not likely this thing is cured by surgery.

So I go over the What Ifs all the time. Most of them depressing. Everything that comes along with What If I die.

But I keep coming back to What If I live? What If I feel good this summer? What if I don't have cancer? What If I get to go everywhere I always wanted to go? What if life just gets better? What If I get to be anything I choose to be? What if I get to send my kids to college? What If I get the be an old lady? What If I live so long spring gets old?

Are those the possibilities everyone wakes up with? Lucky everyone! Lucky me that I even have a chance at that. Wow.

i've come to my senses

Turns out I don't even need Lortab (so far). I am walking around just fine. They cut a nerve during surgery 4 years ago, and I haven't had feeling in the thigh since, so I'm sure that's helping. And they didn't mess with a muscle (they had to move one last time to cover up my artery). Anyhow, I am feeling great.

The Dr. said he had a pathologist looking at the tissue he was cutting out to make sure they got it all, and assured us we had clear margins. He said the tumor was hard to find, even after he had taken it out in a large chunk. I was pretty happy about that.

As he was cutting on some of the old scar tissue, he could tell the scar tissue wasn't getting any blood supply, so he went ahead and cut out the entire foot-long scar above the tumors. Just thought I would share some of these lovely images. And all my good news. Thanks for your thoughts and prayers, they seem to have really paid off. I am in great spirits.

Tomorrow afternoon we will see what the pathologist had to say. My guess is that if they only see cancer in the tumors, the Dr. will say we just do what they call 'watch and wait.' Scan every 3 months and see if I am a lucky one who has it taken care of by surgery. If it is in the nodes or leaking out of the tumors they might recommend some other type of treatment. I am finally informed enough (3 hours a day on the computer researching melanoma) to think that maybe watch and wait would be okay. It is not my first choice, but that is the standard of care. The problem I'm having is that the standard of care is not having great success. They think wait to use the toxic treatments until I need them (stage IV). And hope I don't need them.

Post-op

I am out of surgery. The incision was bigger than planned. I came home with a drain in my leg :(

I will go see the doctor tomorrow and should have results then.

I am grounded from blogging on loritab.

back to the drawing board

Kind of left this on a bad note. Things got better, and I had a lovely weekend. Lots of nerves today while waiting for this afternoon's randomization. Nurse just called. I got put on the GMCSF arm (the one I didn't want)! A bit bummed, I really thought I would be doing the vaccine. Only 1/3 of the people get the GMCSF, but I'm good at beating odds. I knew I would drop out the trial if this was the arm I was put on.

So. Surgery on Tuesday. Stoked about that. Now to find something I qualify for after to take care of any cancer cells floating around....