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.

game changer

Ultrasound today showed another tumor above the original. Also possible involvement in a couple lymph nodes in the groin. Holy cow, can I please have a day without bad news?

Surgery if off and PET scan is being scheduled for tomorrow. If it is just in those nodes we may be doing the same treatment. If it is not cancer, but inflammation in the nodes, we go back to original plan. We need to scan and make sure it is no where else.

I took it like a champ today. Go Alisa!!!

just kidding

Changed my mind.

I felt so good about my decision this morning. Took my time getting the kids ready. Breakfast, homework, chores, hairdos. Thinking how great it was I could try something for this cancer that would not take me away from home.

Met with the trial nurse after I got them off to school. Got all the details about the vaccine. Really didn't like some of them. So I called and scheduled surgery for Friday. Ultra sound to get the exact spot (although I can now feel it with my fingers) tomorrow. Trial is off. I don't know exactly what we are going to do after that. But it's a start. I know there is really no great option right now.

But this one I feel good about. If you haven't noticed, I might have some negative thoughts that creep up every now and then. For some reason having a tumor in my leg does not help. The creepy thing stares at me from inside, planning her next move with a wicked laugh. I'm seriously hearing voices from inside my leg.

And I'm talking back. "Game on Cancer."


p.s.

My moods are changing every hour, so posts here are not an accurate picture of my day. I was thinking today I need to see a motivational speaker after every depressing Dr. appointment. That is probably called counseling. And there are those voices...

But usually (like right now) I'm thinking I'm just fine. Just happy. Just like I'm supposed to feel. Just like it used to be. I feel like me sometimes. Just enough to get me through.

tmi

The Dr. today, the melanoma specialist of Utah, agrees with the first surgeon: Try the vaccine injections first.

I can't help but think, Really? This is it? This is the best you can give me? A trial? Am I down to that? Is this as good as anything you got?

I don't know what I wanted to hear, honestly. I think I wanted someone to say "I see this all the time, this is exactly what we do for it, and this is the kind of response we have for it, and you are going to be okay." I never hear that. Not like they are saying I am terminal, but they just make it sound so serious. Dang it!

He said the chemo to the leg (ili) would not work because my tumor is too high up on the thigh. He said that might have been an option if I just had the first metastasis (on the knee) to deal with. So we rule that out. That is okay, I've never been 100% sure on that one.

Biochemo he says would be better with more disease to measure it by. It is a very toxic treatment for a little response rate (which is what everything has at this point I guess). But in some people it provides a durable cure. So that is for sure an option down the road. I thought now too, but maybe I should try something easier.

The vaccine is promising in a small percentage of cases. And that is the case for all my options. And that is why I'm a case right now. It makes sense to these guys to try something that is easier on the body, because I could be one of those great responders. If it works on the tumor it is likely providing a systemic response that is working on any other cancer cells that may be in the body. They inject the tumor (guided by ultrasound) every 2 weeks and see if it's shrinking. Scans every 3 months. Take it out if its not responding or growing too fast.

"How long do we just wait to see if it's working?" "I don't know, what if you saw that tumor shrink within a couple treatments?"

I'm not sure I'm in a frame of mind to decide what is best. This is what the specialists think is best. I need to trust them and go for it. I am filling out the paper work tomorrow and will make sure that is the right decision before we start (hopefully the end of next week). But living with a tumor? That is going to hard.

Why is this stressing me out? A wrong decision could mean pain. Not for me, but for everyone I love. The more they love me, the more they get hurt. Think about hurting your husband, parents, kids, siblings, all your friends. The weight so heavy. I know no one would blame me for anything but they watch me suffer and I watch them suffer. All of them.

That hurts to even write it, but that is what I feel like.

In response to the "how bad is this" question I asked the Dr. today: "I can't give you exact numbers. I can tell you if we did nothing at all you would die of melanoma. I can't tell you if that would be in three months or three years." I'm not even including the most depressing quote.

On the brighter side, let me tell you all the good things the Dr. had to say:

*"I've seen people come back that haven't had melanoma for 30 years."

*"Our goal is to cure you of melanoma so you are around to see your kids get married and all that."

*"I have seen some very dramatic responses with this trial."

*"There are a certain percentage of patients that have it come back in their extremities and it doesn't go anywhere. I've seen it a number of times."

In response to my statement "It sounds so hopeless." "It's not hopeless. One thing you have to remember about melanoma is it's so tied into the immune system that I have seen a number of times patients go into spontaneous remission just on their own. Their body recognizes it and kills it. It's a difficult situation, but not hopeless."

But when I try to get numbers out of him on any of this he will not tell. Maybe they don't matter. I could definitely be one of the some that he is talking about.

How am I today? I am not okay. I have to be strong around the kids. I have to be mom around the kids. I have to put on a birthday party and smile all night. But when they go to bed and it's me and Josh I just want to cry.

A fire truck might have even pulled up to the house today. Just that kind of day. Excited for tomorrow. And it feels so much like spring!

what a joke

Alisa Linton paces her homes' narrow hallways wearing her hello kitty robe and a furrowed brow. The kids are asleep, the husband is at the park with the dog. Thoughts are the only noise. They are loud enough she now has a headache. She has read and reread all her medical reports of the last 4 years. Researched treatment options in all her spare time. Tomorrow is her Day of Decision. Her flight instinct can no longer protect her. Time to fight.

And she is ready.

Giving myself pep talks only goes so far. What do I really want to hear the Dr. say tomorrow? "Just kidding!"

a spoon full of sugar

I could not dream up a prettier place. I need to get the pictures on my computer and share.

big pills to swallow

For this solar powered girl, Hawaii was just the thing. Walked into the Dr.'s office today feeling hopeful and resilient.

Walked out feeling weak and defeated.

I wanted to go to this particular Dr. again because last time when we found out the 50/50 chance of life he gave me a great pep talk on how to "fight hard" and keep a "positive attitude" and how I "can do it", etc. So I was kind of hoping for that today again, as the previous appointments haven't been exactly cheery and inspiring.

First thing he says after hello: "Well, I'm sure you have done some research and know this is a bad thing to have come back."
I looked at him strait in the eye. "How bad?"
Silence. Finally: "This is likely....fatal."
That last l hung in the air. A capital L.

I hope I'm making things up, and that I'm blowing things out of proportion, and that I am wrong in all my research. But here's what I'm finding: Although technically a stage IIIc (bad enough, 27% 5 year survival and 19% 10 year survival), I think I am more in the class of recurrent melanoma (melanoma which has come back after initial treatment), which is awful and usually grouped with stage IV when researching treatments.

This is the kind of thing I am reading on cancer center websites:

Patients with metastatic melanoma who have failed initial systemic therapy are infrequently cured with additional therapy. There are many choices of therapy and access to newer treatment strategies in clinical trials. These therapeutic choices may prolong survival, reduce symptoms of progressive cancer and/or offer the chance of cure. Patients need to assess their treatment options and consider their individual goals for receiving additional treatment.

Treatments that are part of curative and palliative strategies include: single agent and combination chemotherapy; biological therapy with interferons; interleukins and vaccines; combination chemotherapy and biologic therapy; external beam radiation; isolated limb perfusion techniques and surgery.

MY individual goal is cure. Don't read into this that I have given up hope, or think this thing can't be beat. It does happen, so why not happen to me? I have lots of things going for me. My cancer is only in my limb as far as they can tell. That is great. I found it relatively early, and only have one known spot now. This means my tumor burden is low, which gives whatever I'm going to do a better chance at working. I have Dr.s who can perform all the procedures and offer clinical trials. I am young and healthy. I can handle the more rigorous treatments. I am surrounded by people (many virtually) who pray for me.

So...I'm meeting with one more Dr. on Tuesday. Hopefully surgery the end of next week. The two major options after excision seem to be the isolated limb infusion (ili, chemo put directly into the leg during surgery) or the biochemotherapy (imunotherapy combined with chemotherapy). The surgeon today was thinking ili might be the better choice. The Dr. I am seeing next week has the reputation as best in the state, so I hope he has an idea which would be better. Or as things have been shaking down lately, he might suggest something totally different. Wow, I just need a plan. This is draining.

mean time

I am having my results reviewed by some different doctors, and meeting with another surgeon on Friday next week. Surgery most likely the week after. It has been so hard to hear all the different opinions on what to do next. I'm good at being told what to do and getting it done. But they all say they can't tell me what is best. I just can't wait around here anymore. We are headed to Kauai this morning. It's the only thing that is feeling right right now.

appointment

No decisions on treatment made today. I will be doing some research and getting a second opinion. There is no treatment that helps everyone, just a handful that some of the people respond to. It could be as easy as an injection in the tumor twice a month, saving the harder treatments if that doesn't work. I have such a headache, I wish I knew just exactly what to do.

in, like, a lion

We have had a wonderful, normal day. I am feeling lots of love and prayers. I know I could feel bitter right now, but I mostly just feel blessed.

Below is my facebook post about 6 months ago. It is a short summary of my history with cancer. I don't know why it took the Dr.s telling me I was clear for me to believe it. But it was so much fun to believe!!

The Perfect Brightness of Hope

by Alisa Johnson Linton on Tuesday, September 21, 2010 at 10:45pm

September 21, 2007 we learned that the melanoma I was previously diagnosed with had spread to three of my lymph nodes. Everything seemed so depressing and hard. At my stage (IIIB), I was given a 50/50 chance of survival. I had two surgeries, and 9 months of medication. I have had scans every 6 months to make sure it hadn't come back.

Well, today was my last scan and it came back CANCER FREE! At stage IIIB, melanoma will usually reoccur within the first 3 years, the chance of reoccurring after is less than 10%, or some studies say 5%. I'll take it!! And run!! I actually am running a fever today with all this excitement. How can I help it? Under all this wonderful September sunshine, someone tells me I have a long life after all. Such a blessing, such a surprise, such a gift, such luck! Such happiness!!

I am so sincerely grateful for my incredible support group. Family, friends, and strangers that gave me strength and hope. And bless you-chocolate. For all the prayers and acts of kindness, THANK YOU!! So many tender mercies along the way. Like the $5,000 that Josh just won in a drawing that is taking us to....Disneyland!!! Magic!!!

Group Hug!!!

Way too many exclamation points, I know!! I know!!!

Three years ago and scared spit-less.

Last time! Did I mention I'm happy?

Wow. I was just reading the Sloan-Kettering article on relapse the Dr. handed me that day. Sure enough, less than 5% of recurrence happens after the first 2 years. It usually comes back much quicker. I beat the odds. Let's make that a trend.

I am so glad to say goodbye to February. My sister Sonja and I are always dreading that dreary month. Were our feelings foreshadowing February 2010?

Her son, my nephew, finished his first round of chemo. Updates here: http://stevenbattlescancer.blogspot.com
Go Steven!!