Life…..with Melanoma
my journey on clinical trials with stage 4 cancer

Jun
29

I know, not very clever but what can I say it’s been stuck in my head for days.

Frequently asked questions:

-Did your hair all fall out? Yes and no. I spent some quality time outside pulling it out because it felt so damn good. But I realized it would not all fall out on it’s own and I wanted it out, so I had Mike shave it. A new experience for us both.

-How does it look? and feel? It looks pretty good I think. Only one dent from brain surgery, the rest a nice bald head. The weird part is I have these 2 spots of pigment? or something on my skin- like your dogs skin! Do people really have that? And weirder still is they are symmetrical and reminds us of where some sort of monk might grow their hair back. It’s not radiation burn so it’s a mystery. And it feels great. I am sweating a ton, so it is good to have the baldness. I have some great ideas for fun with baldness-how about coloring all over it with markers? Or when it finally starts to grow back in getting some cool designs cut in it?

-Did your hair fall off all over your body? Not really anyone’s business, but no I still have my eyebrows and eye lashes.

-Are you in any pain? Nope, none at all. I sometimes have a mild headache, but nothing big. My biggest complaint is sweating and the radiation burn on my forehead is driving me nuts. It itches, tingles, and hurts all the time. So while the radiation is killing tumors I really don’t have much to complain about.

-How’s Lola? And Mike? Both are good. Lola is enjoying our time outside- sans hat or sunscreen because it is so rainy and cold here! Mike has even left me alone-gasp- to go fishing. Which we both need.

-How much are you sleeping? Only at night. I rest a lot during the day, but never fall asleep. I just lay down and totally relax and try to calm my monkey brain down.

-What are you doing all day? Are you bored? Lonely? Well I of course have lists and I just do a job, lay down, take the dog out, lay down, eat, lay down. I am seriously fatigued, my legs feel like they weigh a ton and I am really carefull where I walk and move. I have left the house a couple times for lunch, errands, and a movie- that about killed me. I’m not bored or lonely. I have blackmailed friends into coming out if they bring me lunch. Nice friends I have, I am very lucky. I am just feeling tumors die and getting ready for the next step.

OK now the real reason for this blog post- my Relay for Life quilt. My Mom has created a beautiful calming quilt this year- some say her best ever. As usual it is meticulously sewn, filled with gorgeous fabrics, and professionally quilted. This year it is 72″ x 72″” . Because I am killing tumors I can’t be driving around selling raffle tickets so I’m counting on you all to buy tickets the snail mail way. It’s a deal at $2 a ticket or 3 for $5. If you live local and want to take it to work or clubs or groups you belong to and show it off to sell tickets, I will help get it to you. Of course all money goes to ACS. Thanks everyone for your help and love.

Jun
17

This is why I am alive.

This is why I go to Providence Cancer Center.

New hope for cancer patients: Providence selected for international research network We are pleased to share exciting news with you about Providence Cancer Center. As you might have seen in a front page Oregonian story, Bristol-Myers Squibb is announcing the formation of an unprecedented international collaboration of 10 leading research institutions – and the Earle A. Chiles Research Institute at Providence Cancer Center is a member of this elite group.
All members of the group, the International Immuno-Oncology Network, were selected because of their focus on immunotherapy – the idea that the body’s own immune system can fight cancer. This has been the cancer research focus at Providence for 18 years.
This network of exceptional physicians and scientists will take cancer treatment research to a new level, and Providence will be part of it. Our participation will allow many more patients at Providence to participate in clinical trials every year.
Our selection to join this network is the direct result of the leadership and hard work of Walter Urba, M.D., Ph.D., and Bernard Fox, Ph.D., and the commitment of their entire team of experts. It is an honor for Providence to join this collaboration, but more importantly, it carries a strong message to those we serve – we are working with the best in the world to win the cancer battle. Read the news release and view the videos »

Providence Cancer Center awarded quality certification Providence Cancer Center also is the first site in Oregon to be certified by the Quality Oncology Practice Initiative, an affiliate of the American Society of Clinical Oncology. This certification recognizes oncology practices that meet the highest quality standards for cancer care.
“We are thrilled to have received this certification,” said Dr. Urba. “QOPI is a clear designation from ASCO that recognizes our commitment to quality cancer care.”

Copied from a Provence news release.

Jun
16

In the midst of this shit storm of a life I have found myself in, I find I spend alot of time realizing how blessed I am. I have had an amazingly charmed life. And still am. I may be walking thru molasses and realizing the dog did indeed eat my wallet and license so I need to get down to DMV before I lose my hair for that very important photo-don’t worry I’m not driving.

But I also am alive. I’m not in pain. I have a quality of life that is good. I sleep soundly next to my snoring husband every night. I have quite the appetite and eat well. I smile and talk and feel pretty damn good. These tumors are burning up inside me.

I fell in love and married a man who I have grown with for a long time. We went on adventures in this world hardly anyone experiences. Unfortunately the changing world as it is, people may never get to those parts of the world for a very long time.

We made some very beautiful children, yes we did. And I am super sure they will live happy lives- and are now. I am proud of them both and love them so much.

Then we went on more adventures on this small blue marble, dragging the kids along. How that changed and shaped us all.

I feel so lucky to love where I live, love where I worked, love my family and friends who have literally gotten me through all this. Actually are getting me through it all.

So my reason for sharing all this-and I’m sure I forgot so much- is to officially let folks know this is not over. I’m not done. No one needs to curl up in a ball and cry all day. No one needs to come say goodbye. This melanoma is bad, Providence and myself are kicking it’s ass as we speak, and we have a plan for more ass kicking in the future.  So think good thoughts and prayers, send me love and cards- am finding those good to get-or whatever makes you feel better. But don’t for a second think I am giving up. My life will go on, Lola will get mellower, the summer will come, and I will have plenty more to be thankful for.

ONE DAY LEFT OF RADIATION

Jun
12

6 down, 4 to go as I am ferried up and down I-5. So far so good. Today I think I feel the most perky, but that may be because I am so excited to cut down these damn steroids. Checked in with the Dr today and everything seems a go.

So what is my life like now?  Well I feel heavy and slow still, my brain seems to be working fine, and I have a good appetite. What I crave most? The one thing I never used to eat. Anytime we went out to Mexican food, I always got al-acarte because I really didn’t like runny beans and cheese. But now, that’s what I crave. Mike has made an awesome batch so I eat it everyday. Weird. Fruit is good. And alot of protein. Oh and every night a fudgesicle since it’s summer right?

I’m not sleeping during the day yet. And unfortunately sweating all night:/// I want to blame it on the steroids, but could be hormones, other drugs, but the Dr said it could be dying tumors! So as I get up for the 3rd time to change soaked jammies tonight I’ll smile an evil grin to dying melanoma.

I do alot of sitting and thinking too. Staring out windows and sitting outside with Lola. My legs are a mass of bruises from her- 90 pound puppies have no sense of personal space. My arms and hands still lovely shades from all the IV’s. Damn, when will they just always use my power port for everything medical related??

What do I think of? Life and love and death. A million conversations with my kids. The fight ahead. Of course these tumors dying and dying and dying. So many words it’s hard to imagine I could ever have so much to say. What an ego I have.

Jun
07

Hey all, this is the real me, short and sweet. Live and local from my Mom’s house in Salem.  Still have my brains to write I think- you tell me I guess; still have my hair-now that I kind of like my curls they will soon be gone though; still have my spunk and fight-it’s there in me.I am having to dig deeper because I still feel like I am recovering from my hospital fight and I am gearing up for this radiation fatigue, so am tired and slow. Even if the word is we have killed the weaker melanoma cell’s and are now into the strong ones, these fuckers are goners soon as far as I’m concerned.

Most important I have my dear family and friends. My Mom has been nursing me beautifully but she is sick now:/ My sister has taken all week driving me up and down to my radiation appt’s even though she hates city traffic. I must say, she is getting it down great though. They both camped out at the hospital and endured some pretty uncomfortable bed situations as they advocated for me. What would I do without them both? I love them so much I can not express it.

I can’t thank friends enough, many I don’t even know what they did while I was in the hospital.  Carrie loved my Lola like her own. Kym was my ambulance driver and has gotten William thru many hoops so he will get to walk at graduation! My sweet Willy, I am so proud. Helen has cooked me nourishing food and taken those scary steps into the hospital to hug your sick Mom. Mike has come home from a great trip to a nightmare and is trying to keep things as normal as possible at home, as well as driving up to see and stay with me. Sandy wrote for me, Stephanie was in the hospital with me but really all that is a very ugly nightmare.  And really I am sure so much has gone on I have no idea about.

All the love pouring in I can feel. I need it for sure. I want to share this burden with you all, by giving you my tears and hope and love. Deal is you need to pour your love and strength back to me. Help me with this burden because it is going to be a damn fight for sure.

Here is a pic of my Jason mask in case anyone has never seen one of these. Not really bad, form fitting for my whole brain radiation for the 4 mets I have now. It was funny, I wasn’t sure how to feel about it once I held it today. It’s helping me but it sucks. Do I smile, frown, growl? Join me at 11:30 zap time every weekday if you want for some visualization, prayer, whatever floats your boat. They zap my brain, then that damn heart tumor. Oh and did I mention, unofficial word is my heart is back in sync and normal beats.

Right off the bat, first card I read said some very strong words. Give me strength for today and hope for tomorrow.  Those hallmark people hit a home run on that one. Can you tell my Mom and Laura watch baseball? So I’ve been getting into Mariners games too.

You can email, reply here, snail mail, texting is hard for me sort of. I would love to see folks, but really want to spend these weekends home with family. Thanks for all the love.

May
06

On Wednesday May 9th I will enter the world of the 5 year survivor. 5  %#@&$! years- can you believe it?! I almost don’t myself. At 5 years they tell me I am in a small group of 9%-20% survivors- depending on whose numbers you want to believe. At 5 years I just know I have seen and done things I never imagined. And as for the next 5 years? I’m ready to live those even better.

So of course I need a party to celebrate this grand accomplishment. And I need any and all of you to come join me:)

On Thursday night, May 10th, come join me  at Ring of Fire for drinks and hugs all around. I will be hanging out in the Orchid room from 5-7pm and would love to see you. Remember to introduce yourself and others, just in case my brain has a slight hiccup; bring some cash for a drink-they have some great ones; come for 5 min or 2 hours; and please extend this invite to anyone I may have missed.

I look so forward to seeing you, catching up, and feelin’ the love!

May
02

So much going on around here, I feel such pressure to get all the info to you in a clear and concise manner.

First off I am heading into week 8 of my 7th trial, the MEK162 at OHSU. So far so good, handling side effects ok, and we will see early next week with scans how this drug is working on my heart tumor.  It has been interesting to get to know a new hospital system, a huge system at that. I couldn’t count how many different dr’s, interns, nurses, techs, and all the other people who I have no idea what their job titles are. I appreciate the jobs they do for me and hope I thank them enough.

Not related to the trial at all was my sub Q belly tumor. Technically it is called a cutaneous melanoma metastasis. It has been hangin’ out right below my sternum, doing weird stuff at times, but ultimately growing larger. So it was time to get rid of it. Now the concern was how my heart would handle general anesthesia with its own tumor. So my surgeon decided to go in with MJ’s drug and a local, which means I was technically awake during surgery! But sadly I wasn’t. I’ve always wanted to be awake during these surgical procedures, but I remember less of this surgery than other ones. Surgery was monday, spent the night up at OHSU- great hospital food, that was the weirdest thing for me. I am home now recovering. Pain is not too bad, the addition to my Frankenstein look of scars is impressive since it was a squash? ball size tumor. Is that an indoor game? With pumpkins and paddles? Wrong season is all I can say. I need to get this wound looking good since swim suit season is right around the corner! lol

Now in the middle of my trial I got the privilege of being a caregiver and really loved it. I hope to help out more when what appears to be a zipper going up my center is healed. My Mom took a bad fall in downtown Portland- those mean streets. She broke her arm, up near her shoulder and broke a chip off her shoulder- so we both have a chip on our shoulders now!! Anyway, after she fell I had to drop her at the ER with Laura, while Helen and I headed to my appt at OHSU. Then we picked her up and headed to her home in Salem. I stayed for a few nights and have been staying with her more around my Portland appts. I really have enjoyed helping her out. It is nice to be in the caregiving role, to pay back some of the incredible caregiving I have had. Spending quiet time with my Mom has been really special too. Like I said, she has a long road to heal and I will be back next week to stay- we can care for each other:)

Back in November I made a wish to my special 3’S friends. I told how I loved all the memorial benches and wished I had one when I was gone. Well last weekend I finally got to the beach with them and they revealed in Yachats- MY BENCH!! They got me a bench, overlooking Yachats bay. I was flabbergasted, shed tears, was speechless, and of course spent some time sitting on it. They had decorated it with beautiful silk ribbons. Can you believe it? I have a bench!! I am still speechless. I’ll post a map so you can visit it next time you’re in Yachats. Thank you:)

One last thing…..heading into May now. May 9th will be my 5th year anniversary of being diagnosed. 5 years. I just read somewhere that I am in a select group of 9% who are still alive at 5 years with my level of disease. Some stats say 15%. But really who cares, I am breathing some rarefied air here and I truly appreciate each breath.

MAP_Bench_see_red_at_bottom

Apr
21

First off lawn is an exaggeration at our place.  5 acres of grass mostly, the “lawn” portion is the grass surrounding the house. Grass, weeds and daisy’s.  Plus all the animals out here doing their part to help it along.  It never get’s watered,  weeded, or fertilized- only mowed. So lawn is definitely an exaggeration.

Could Mike mow it with the riding lawn tractor?  Of course he could.  Has he offered to mow it? Many times, and when I’ve been too sick he has mowed it.  William has been known to mow it too, or was that just a dream?

But I love to mow the lawn. I always have. I didn’t have a lawn as a kid. As a young adult my allergies always got in the way. But after I discovered the magic of allergy drugs I really found my love for mowing. Now Ippi has really changed my allergies, actually made them all disappear, so mowing is a breeze!                                                                                                        

For me mowing the lawn is an accomplishment I love to finish. It always looks so good afterwards, makes me tired and sweaty, and if I’m able to start the old pull start mower by myself it is a double bonus.

Today was such a day. And it was only the second time I’ve mowed this spring so the grass was long and unruly and wet which makes for a hard job of mowing.

Sad part-I  had to mow the wonderful daisy’s that grow in the grass.  Happy part- it makes the big dogs white socks turn green. There is nothing like a dog with green grass feet.

But shoeless? Barefoot? That is the first big safety violation on Mike’s list. Fortunately he was out on a motorcycle ride and he rarely reads my blog, so I think I am safe from a ticket for now.

A few steps into it my old gardening croc’s started to give me another blister and I’ve already cut the button and back strap off.  After more shoe pruning they still rubbed me the wrong way, so off they went.  To hell with them. My philosophy is that in this day and age no one needs to feel any avoidable pain, especially myself. We all feel enough pain we can’t avoid.

So how did barefoot mowing work out? Excellent. It felt so good! The cool wet grass squishing between my toes. Only occasional sharp objects-don’t worry, for sure this girl is updated on all her tetanus shots. My feet turning greener and greener. It felt like some weird foot massage. I think it was good for my brain too! My mind had to watch where the mower was going and at the same time it had to deal with all the new sensations under my feet- was that a weed? grass clump? pine cone? stick? dog poop???

Insane I know, to mow barefoot with a dog whose poop is larger than my foot. But I was on the look out of course. And I only had to make a couple dog poop popscicles! Only those who mow dog yards know what a skill that is. Since there were few, I realized that Lola has finally figured out she lives on 5 acres of glorious land to go on.

After a long shower with a lot of scrubbing my feet are almost back to their normal color. But luckily they will never be the same.

Mar
25

I have so much news to share, but I am going to start with the latest first and we can just work backwards in life. ( spoiler alert, I am fine)

Oh how I love electricity, that magical, mystical, mysterious stuff that just appears in your house and makes it all work. When we built our house 19 years ago, the inspectors would come to inspect our work and Mike would invariably chat them up and they would stand for a time talking about fishing, hunting, and other manly pursuits. I noticed that nothing was really looked at, checked out or inspected. And that seemed ok with me, until the electrical inspector came. Now the electricity I was worried about. Just because I didn’t really having that keen a grasp on it, I wanted to make sure everything was kosher before we sealed up the walls and turned it on. The same conversations ensued and as the inspector turned to leave I had to stop him with a “hey, aren’t you even going to look at anything?”  He replied that “he knew the electrician that had helped us so he was sure we had done a good job” and left. Besides pissing me off thinking about all the building permit fee’s we paid for these inspections, this also just added another layer to the mystery of electricity in my mind.

Fast forward to last Tuesday night when a lot of snow fell and our power went out. No more electricity. We live out in the country and have lost power before and we are set up better than a lot of folks. We have a wood stove for heat with plenty of wood and we can cook on it- I made toast, warmed up cinnamon rolls, and boiled tea water on it. We also have a gas stove, so we can cook anything.

What we don’t have is water. No electricity means no pump to pull water from our well, which means no drinking water, showers, laundry, dishes, hand washing, or toilet flushing. That’s the big one. For me especially, since on lucky drug #7 I have slight diarrhea. So the big question is how many times can you flush before the tank is empty?? And we all got creative with peeing outside- I mean hey, we have woods, all the animals do it, and who doesn’t like to channel their inner Calvin and pee in the snow:/

Of course we need to deal with our food in the fridge and freezer. How long will freezer food stay frozen with no power? Fridge food goes into a cooler and you end up eating out of a cooler- kind of like a long road trip with no bathroom breaks. And anything you cook results in dirty dishes that just sit there in the sink, mocking you.

Then as soon as it gets dark, it’s dark. We round-up the usual flashlights and set out candles all over. As an added excitement I tested our smoke detector batteries by starting a small fire on the kitchen table with candles! Boy, was Mike thrilled with that activity. No harm done to table or tablecloth even. But we won’t tell anyone about that.

I do love the snow though and played outside knocking snow out of our tree’s and playing with Lola. She loves the snow! I would think her feet would get frozen but she could care less and will stay out for hours.

So time went on, the week went by, we all got smellier, dirtier, and my hair was out of control. William is a lifeguard so he could shower at his pool everyday- not that he cared too! lol We finally went into town one afternoon to feel electric lights, get a new supply of books at the library and eat something not out of a cooler!

Of course everyday involved a call into the power company……hey, don’t forget us! We’re out here too!!! We desperately need to flush the toilet!

Then the worst happened on day 3- the neighbors lights appeared! No generator involved, they had power, electricity! How could this be? One house from us had power…..NOOOOOOO

More frantic calls, Mike drove around the neighborhood checking it out, yes indeed they had it on up to us and then stopped. Oh the cruelty.The electricity was so close. Up the road from us 3 poles were down, lines all over on the ground, it was a mess that would take a while.  I was ready for a hotel-I really wanted a bath to soak my aches away. But I pulled the last candles out, put fresh batteries in the flashlights, moved things around so we wouldn’t fall over stuff in the dark night and resigned myself to another stinky dirty night.

The afternoon of day 4 is when we heard the cavalry coming- several electric trucks came roaring up around our corner and heading up the hill. Mike and I stood in our window and cheered! Maybe it would be fixed by tomorrow!! We talked about all we could do with electricity!! But surprise surprise, a couple of hours later 2 trucks came down, popped up in their cherry picker, used their long pole to re-hook our lines and poof! We had electricity!!!! We cheered and hugged and yelled thank you out the door to them.

The fridge hummed, the freezer purred, the hot water heater grumbled, I could turn the bathroom light on and flush!! again and again:)

The funny thing is, after waiting for hot water showers, we both climbed in bed and read- with the lights on, but I still left the candles lit. Neither of us ran to turn on the tv or the computer. So while Mike is off doing chainsaw work for friends with downed trees,  I think while I clean house today I’ll turn the radio on, that might be nice. I’ve pretty much ran out of conversation topics with Lola .

Feb
10

In the works for what seems like 2 days and 2 years at the same time, has been a trip with who I call my 3 SSS+C. They are four good friends of mine who decided we needed a trip. Away. Far away. I was bold enough to say sure, what could possibly go wrong in my life that would complicate a trip?? Well two weeks ago I was entering my own private birthday trip to the hospital.

But tomorrow I am flying away to a sunny/rainy place- who the hell cares, it’s 80′ on the Caribbean sea’s:)  Akumal Mexico is our destination, south of Cancun. Last time I was there was 30 years ago, I kid you not. When you could climb to the top of Chichen Itza,  park a van on an empty beach to sleep on  and, my friends were kind enough to point out as they looked at old pictures, my breasts were a lot perkier…..see why we love to travel together?!

So in case anyone is worried, I am fine. At this stage in the game I am truly as good as I’ll ever be, so I might as well go now. And I am traveling with a friend  whom my Dr has designated as “in charge”, another friend who is a nurse, another friend who has been to Akumal several times, and another friend who helps me slow down and see the beauty in all things-nature, conversation, friendship, food.

I also have enough drugs to change the score of the Superbowl, new swimsuits, and an awesome fro! The photo’s of my hair alone as the week progresses will keep me laughing for years.

I am off to bed, I was going to google translate this all to spanish, but I think sleep is too important. Please don’t worry about me anyone, I’ll just be working on my tan you know. I’ll think of you all as I do my favorite thing in the whole world- floating in a blue sea, even in the rain.

I’ll end with the one important spanish phrase that I learned.                 Cómo no dura mis perras, las suaves!