Is it the end?

About a month ago I met my new oncologist, Dr. Wahl. She is taking over Dr, Kraemer's patients. I'm not good at new things, so this was kind of awkward. First, I couldn't see her in August like I wanted to because she didn't have an opening for a "new patient". I didn't think I was new. I'd been going to their office since 2009, I just never saw her. But then again their office was closed (that's another story). So I had my appointment in September. I'm not sure why this bugged me, but my yearly appointments have always been in August and I kind of wanted to keep it that way. I had a schedule and I didn't want it to break it. I even sobbed over this. It is always amazing to me how emotional I privately get over cancer stuff. I'm not talking about a tear escaping, I'm talking about hiding-in-the-shower-with-tears-streaming-down-our-cheeks-and-running-out-of hot-water-before-you-stop-crying emotional. (I'm sure my high school English teacher just grimaced with that sentence.) 

I met with Dr. Wahl and she and I discussed my medical history and unlike Dr. Kraemer who didn't insist I get my port out and left it up to me, she highly suggested that I get it out.

Her: "Think of all the free time you will have when you don't have to visit us each six weeks to get a flush." 
Me: "But when I do I ask for a blood draw and we are keeping tabs on the cancer." 
Her: "You don't need it, treatment is over."
Me: "But I'm afraid it will return and kill me."
Her: "There is a 2% chance it will return."
ME: "But there is a chance."
Her: "I sent the paperwork in for surgery. I see you like Evergreen."
Me: "But there is still a chance."
Her: "I declare you cured." 
Me: "I give up!"

So yesterday, Oct 18, 2016, I did it. I had it removed. If I had gotten it out in August 2010, it would have been a very simple five minute process in a sterile room. But because I have had it in for six and a half years, I had to be sedated and it had to be done in a OR room. Of course it took only a few minutes and I wasn't totally out (or so they say). I went in as 12:30, surgery was at 2, and I was home before 4. Easy! 

I'm just recovering now. No lifting for two days, No showers for two days (they didn't stitch the wound close--used some bondo for skin stuff). and then I should be right as rain. Except...Is this really the end?

I truly am so nervous. This has been one of the hardest things I've ever done. Physically it was torture. I've reread my journal during active treatment and I can't believe I lived through it. The memories of the physical pain make me cringe and cry.
"Like giving birth to an elephant,"
"I can't seem to catch my breath, "
"I can walk up and down the stairs twice a day, so I plan my day carefully." 
Emotionally, I still live it. I look at the marks cancer has left on my body every day in the shower and when I'm getting dressed and I thank my lucky stars it's not worse, but they remind me every day of the emotional pain I lived through.
"I can't believe I'm bald. My crown of womanhood is gone."
"Nothing prepares you to write your farewell letter to your children."
"Everyday I wake up and think, 'Is this my last?'"
"I want to see my grandchildren."
"Please, just let me live one more day!"
And I continue to say those things weekly, if not daily. 

On Monday night, I almost called to cancel the surgery. I cried myself to sleep.
While in the recovery room before surgery (funny but it was the same room I was in when I went back to have it placed in April of 2010), I cried because...I don't know why I cried. Thankfully the nurse understood; she's a breast cancer survivor. 
After being wheeled back into the room post surgery, I cried again.
And I'm crying writing this.

So I'm not sure I'm happy to have my port gone. It's only been a few hours and I'm still bandaged up so I'm not even sure what the new scar looks like. But I'm sure every morning it will remind me I have cancer. Maybe someday I will say, "I had cancer," but right now that is a dream, I can't say that right now. I can't believe it. I'm afraid to say it. Maybe it will jinx it, maybe it won't be true and right now, my faith sees that 2% chance and it scares me to death.

In the meantime, I'm going to fantasize about going to sleep and rolling over on my right shoulder and not have my port pinch me. I'm going to realize that I can hug someone tight (or them me) and my port won't pinch me. I wonder if that will happen....

I wish I could go back and have my 10 year old daughter whose head would nestle right there and hug her without grimacing. She never saw that face, but I made it each time I hugged her. That one I wish I could go back and redo. 

In the meantime, I might just go take a long hot shower because this has been a really hard road to travel. 
 

2559--a big number, sort of.

The other day I looked at my dayscounter. It's and app I have on my phone that countdowns days (or counts up days) to important events in my life. My favorite category is "Missionary". It tells me how many days a missionary has been out and how many days until he comes home (give or take a few). I really like that category. (BTW--it's about 550 days until Matt comes home).  I also like the "Running" category as it tells me who many days until my next race. Unfortunately I don't have a race in the near future; it's 319 days until Ragnar 2017, if you care to know. 

But there is one category I really don't like to look at: "Cancer". You see it reminds me of all sorts of bad memories. There are very few good memories associated with the word "cancer." I just lived through one of the hardest months associated with the word cancer. 

Back in 2009, I went in search for what was causing my back to ache. The search began in earnest in late June and by mid August a "mass" was discovered. I went in for a biopsy and then waited a very long time--OK, it was only five days, but that seemed like an eternity. 

So I'm not sure what exact date on the calendar you can call my "diagnosis" official, but it was the last week of August. I had the biopsy surgery on a Friday, went to a family reunion and then got home on Wednesday and there was a message on the phone that I had cancer. So was it that Wednesday (on the phone) or the Thursday when I sat in Dr. Kraemer's office and he said the words, "You have Non-Hodgkin's Lymphoma"? I don't know and I don't think one day matters. But for me I put down Thursday, August 27, 2009, as my death date. The date that I was told I was going to die. Ok, Dr. Kraemer didn't exactly say those words, but this is what I heard...word for dreadful word...

Dr. K: "The blah, blah, blah, blah came back and it says you have Non-Hodgkin's Lymphoma, a form of blood cancer. Blah, blah, blah, radiation, blah, blah, blah, chemotherapy, blah, blah, blah, treatment, blah, blah, blah, keep you alive until there is a cure. Blah, blah, blah, blah, ...."
Me: "So I'm going to die?"
Dr. K: "YES!!!" (in reality he said, no, but I heard yes shoulted from the top of the Space Needle.)

When August comes around each year I have to grit my teeth and hope that I don't let a wave of negativity flow over me. It get's pretty hard when you think of all the awfulness that August as brought into my life (I buried my sister and my mom in August and diagnosed with cancer--pretty awful month). But I also have to think of the wonderful things August has brought into my life. 

Here's a short list:
Baby boy #4
Baby girl #1 (Baby #6)
Annual camping trips--always fun
HOT SUMMERS!!!
Fall approaching (I love early fall!)
Soccer season  (my favorite sport)
Remission (August 5th--my new birthday!)

So it been 2559 since that day I sat in Dr. Kraemer's office and he told me I was going to die. Pretty good that I've lived for an extra 2559 days. I hope I have many, many more days. 

And since we are throwing out numbers:
2216 days since "remission" was said.
390 days since 5 year remission (BENCHMARK #1)
1437 Day until 10 years in remission! (BENCHMARK #2)

PS: Yes, I do cry in every August 27th. I usually do it in the shower. Quietly and alone. I mourn for the person I was, yet celebrate the person I've become. 

Celebrating Women... And the Award Goes to.....

Today, March 8, 2016, is International Women's Day. 
I looked that up on the computer and I'm still not sure what it really is about. It has something to do with "Gender Parity". I had to look that up to and by definition it means:
"The Gender Parity Index is a socioeconomic index usually designed to measure the relative access to education of males and females. In its simplest form, it is calculated as the quotient of the number of females by the number of males enrolled in a given stage of education (primary, secondary, etc.)"

OK, I'm not going there. I'm going where I first thought this was going. I thought this was about celebrating the women in your life who made a difference, proved something, and more importantly deserve to be given the Oscar, or Emmy, or Nobel Prize equivalent award to those who are just plain awesome in their own little circle and made a difference in someone's life.

So the without further ado....

And the Award Goes to...

Nellie Nadine Ostler!
My mom has been on my mind lately. January we celebrated her birthday. Dang! Do I miss her. Then my brother's son's future mother-in-law asked for wedding pictures of his grandparents and great-grandparents. Then my son left on his LDS mission and we were back in Utah, a place my mom loved and I saw all the things my mom use to talk about. Then I went to the doctors and they call me by my first name which I share with my mom. Then to top it off, my daughter tagged me in a Facebook post. This facebook post was one where you copy and paste the message and then tag a few more people. This one is about celebrating when you felt beautiful. She actually posted this picture of me and her.

I remember when I first thought my mom was beautiful. I was doing a 7th grade English paper and we had to interview someone in our family and I don't recall the rest of the assignment. I just remember staring at this photo of my mom and thinking, "Wow, she was very beautiful as a teen." 

My mom had me later in life and all my friend's moms were pretty young. They were "hip" and "with it" or at least I thought. I felt like my mom was stuck in the 50's and we were living in the late 70's early 80's and she just wasn't "with it". I actually had to take back that thought. I began to think of my mom as something other than my mom. She had been a teen (maybe she did know a little about teenage angst). She had been "in love" (maybe she did know something about heart break). She had been a student (maybe she did know a little about pressure to fit in or about assignment anxiety). Maybe there was more to her. 

There was. 

And for that she wins the first award in my selection for this International Women's Day award that I'm giving out.

The second recipient isn't a person but a group of people. Granted they all aren't women, but the majority of them are. The award goes to nurses. Today I have the honor of visiting my oncologist for the last time. No, I'm not getting kicked out because I'm cured. He is retiring. We had a lovely chat. He's going to Texas and unfortunately he is taking his lovely wife, his nurse with him. Nurse Sharon held my hand as Dr. K. took a bone biopsy. Nurse Sharon held my hand when she pumped chemicals into my body to kill the cancer. Nurse Sharon called to tell me happy news as well as sad news. Nurse Sharon was there ever step of the way. Today after my chat with Dr. K, I had to have my blood drawn. Nurse Sharon wasn't able to do it because she was administering chemotherapy to another patient. But I heard her words. They were almost the same words she spoke to me all those years ago. But as much as they might be the same, there was sincerity behind them. "Darling, I know this hurts." "Darling, I'm so sorry." "Darling, just hold on." "I'm almost done." "Darling, I know." And she does. She is a survivor herself. 

I waited for her to come out from behind the privacy curtain and then I stopped her and told her "Thank you for saving my life." Of course she wouldn't take credit for it, but I let her know how important the work she did and still does is to those of us who don't see a very rosy outlook on life. Today Nurse Sharon and all the other lovely nurses (male ones too) are celebrated because of their undying nurturing care for those who most of the time would rather be somewhere completely different.

Yes, I cried as I sat down in my car. I will miss her and her husband. 

And the last recipient goes to my daughter. 

I had five boys and then God blessed me with Jessie. I get the "oh, so you kept trying until you had a girl." No, not really. Out of my six children, I only planned my first four. God decided to give me Chris and Jessie. 

I celebrate Jessie because I think she is great and I think she thinks I'm great. She keeps me young and she keeps me humble. 

Why I Hate Liers

I have cancer. I have Non-Hodgkins Lymphoma. There is no cure.

I felt the physical pain of the tumor in my back. I have suffered through two 21 plus days of radiation and 1 cycle of five sessions of RCHOP chemotherapy. I lost my hair--everywhere! I lost a ton of weight. I lost my appetite. I lost the feeling in my toes and finger. I froze, I sweltered; often all in the same hour. I slept but never felt rested. I cried. I threw up. I starved. I swelled. I bled. I was scanned so many times I've lost count. I know which veins bleed well. I know which veins are scared so they will not give blood anymore. I have scars. I have tattoos (they are dots on my body so they can line up the lasers). I have raised money. I have run (Team in Training). I have suffered. I have conquered. I have survived. And I have watched friends die. 

Tracy Dart is a woman from West Seattle who claimed to have breast cancer. She did her first three day walk in honor or memory of a relative and then shortly after that she said that she was diagnosed with breast cancer. Of course she continued to walk and raise money. One report says she (Team Tracy) raised over $414,000 for the Susan G. Komen Foundation and for a year drove a Volkswagen car that was wrapped in pink.  I know of a West Seattle store that held fund raisers in their store for her. People gave her cash for groceries and "$7,000 went to help with living expenses while she underwent treatment for cancer". Meals were provided for her. She claims that she beat breast cancer three times. 

But she lied!

She never had breast cancer--EVER! 

She isn't the first person to do this and she won't be the last. But this one hits close to home. 

I posted this on my Facebook page and I had a fellow survivor just shake this off and said, "I guess as a survivor this doesn't take away the fact I survived. Having cancer was one of the worst times of my life and I overcame it and although it's easy to be angry, I feel sympathy for people who are sad and empty. It does nothing to me, my treatment and my battle."

So why do I care?

I care for the very fact that one person commented on the Facebook news feed when this story broke: "I will never donate to another person's cause." Cancer depends on money so that research can be funded. I'm not sure the cure will ever be found, but we sure can find better treatments. 

I went through one of the harshest chemotherapies for NHL: RCHOP. If the research was better, maybe I could have been given a different drug without all the harsh side effects. They have come a long way, but there is much to learn and discover.

I care for the fact that Ms. Dart claimed in speeches that she went through treatment. I have no words for the hell that I went through when I was in treatment for cancer. Every day (and to some degree even now) I went to bed and wondered if that was the last day of my life. Being scared for your own life every day is unthinkable, but somehow I did that. I wonder what Ms. Dart's evening prayers were? Did she pray, "Dear Lord, Please, let me live one more day. My babies aren't done growing and I haven't seen them graduate yet, or get married, or kiss their unborn babies."? NO SHE DID NOT!

A local TV personality posted this message to Marshawn Lynch thanking Mr. Lynch for giving him the courage to push through a very difficult cancer treatment. In part it said this,
"My doctor, John Thompson at Seattle Cancer Care Alliance put me on a two week treatment of Interleukin 2. I didn’t know he was sending me to hell.
"It’s a drug that has horrible side effects. Let’s put it this way, they put you in intensive care when it’s administered. Your blood pressure drops while your heart races. You get the chills so violently you shake the entire bed. You gain water weight at such a clip you can damn near see your face swell if you were looking into a mirror. Sleeping, yeah, right.  Every eight hours, the process repeats itself. You want to quit. Cancer is kicking your ass. The drug feels even worse. Your life may depend on receiving the drug. Knowing all of that, there’s an even chance you’d run away from the hospital and the drug if given the chance.
"
While in the fog of that war, someone told me the Seahawks had a playoff game. It meant nothing at that moment. I was in and out for the start of the game. I didn’t care. Actually, I couldn’t care."
(Full posting here: http://jessejones.com/story/a-thank-you-note-to-marshawn-lynch/)

That, my friends, is cancer treatment. Ms. Dart is making it up in her speech at the three day walk event. (Truthfully I couldn't stomach the whole 11 minute video so I stopped after 3 minutes of lies.)  She doesn't know. She can't understand. SHE IS LYING. 

I care because of posts like this from my friend Lori: "She stole money from us, about $1000.00. I am assuming we are not the only ones.....the worst part is I sat and cried with her roommate and dear friend over the potential loss of her. I prayed many times at church for her. I could go on and on......."

The emotional thievery is unmeasurable.

I care because others will wonder, "Does Doreen really have cancer?" My cancer isn't visible. I didn't lose a body part. I did lose my hair, but then Ms. Dart shaved all of her off. Who's to know? Not that I want everyone to know, but I do. I want those who are suffering to know you can survive. There is a tomorrow. I know when I was diagnosed I wanted to read all the survivor stories I could. I wanted hope. I know this cancer will kill me...someday. But I want that day to be way out in the distance. I still want hope. I now want to be that hope for others. 

But now I wonder, "Will they believe my brave face? Will they come pick me up from a doctor appointment? Will they bring my family a meal when I just can't get the strength together to do it for them? What proof will be required for me to prove I have cancer?"

I do feel very sorry for Ms. Dart. I feel for her need for this type of attention. I feel sorry for her.

I hate liers. 

Here is part 1 an 2 of a speech I gave at the TNT dinner in Vancouver just before a marathon in 2011. https://www.facebook.com/sblanding/videos/vb.1329747260/1700360552074/?type=2&theater
https://www.facebook.com/sblanding/videos/vb.1329747260/1700407793255/?type=2&theater

Sources for this story: http://www.king5.com/story/news/local/seattle/2016/01/31/local-woman-may-have-faked-cancer-diagnosis/79620826/

http://www.westseattleherald.com/2016/02/03/news/update-cancer-claims-tracy-dart-were-false-she-ha

https://www.youtube.com/watch?v=-h00WKUM1sc (but please don't watch---her view count doesn't need to go higher)

I Don't Want Solidarity

There is a buzz about a celebrity who just cut her very long hair. Clare Bowen who stars in the ABC drama Nashville recently just cut her hair very short because she wanted others to know that hair doesn't make the person. 

"I was inspired when I heard a story about a little girls who said she couldn't be a princess because she didn't have long hair," Bowen wrote on Facebook. "I wanted her and others like her, to know that's not what makes a princess, or a warrior, or a superhero. It's not what makes you beautiful either. It's your insides that count...even if you happen to be missing half of them." 

While I agree with her I don't want her solidarity. She goes on:

"Every scar tells a story every bald head, every dark circle, every prosthetic limb, and every reflection in a mirror that you might not recognize anymore. Look deeper than skin, hair, nails and lips. You are who you are in your bones. That is where you have the potential to shine the brightest from. It is where your true beautiful self lives." 

While I agree with her, I don't need her solidarity. She concludes:

"If it makes even one person think twice about judging another, then in some small way, the world is better."

While I agree with her, I don't want her solidarity. 

Yes, I know she had cancer when a child and was bald, scarred, etc. I know all that. But it is totally different when you are an adult. I don't want her solidarity and here is why:

I was 40 and bald because cancer took my hair. One day I felt good enough to go to Costco. I knew what usually took an hour or so to shop was going to take not only two or three hours but multiple trips to the car because I was still physically wiped out. I have to shop at Costco because, cancer or no cancer, I was still the mom to six kids and all were teenagers. Not only that Costco has a bunch of great frozen dinners and sometimes, that was all I could do for dinner.  I had ended treatment and I actually saw a few hairs where my eyebrows once were. I had peach fuzz. The very kind all my kids had when they were born (well, except my second child who was born with a head of hair). I was actually feeling GREAT compared to the last 11 months. I thought I could even handle all the food smells in Costco without throwing up.

Just as I was about to load my stuff on the belt, one person called me "sir" and I about lost it. Any self-esteem I felt coming back that morning as I stood in front of the bathroom mirror and examined my cancer riddled body was gone. I did everything I could not to cry right there on the spot. It would look ridiculous for a 40 year old grown woman to cry. I didn't make the second trip through the store. I just got in my van, called my husband and sobbed my way home. 

I don't want solidarity.

What does cutting your hair completely off or even a pixie cut have to do with cancer? People who do this aren't sick. They don't understand. It's not just hair on the top of our head. It is our eyebrows, our eyelashes, our legs, our everywhere! Those people will see a little stubble in a few days. I went six months with no hair! Completely from tip to toes: NO HAIR!

I don't want solidarity.

Those people don't have dark circles under their eyes that no amount of make up will change. And just for the record, your skin cells are sluffing off so fast that your face is kind of raw from  washing it. Make up is only for the days when you HAVE to look good. But no mascarra because when you go to take it off you will lose any eyelashes that you have left. Washing your face just plain hurts. 

I don'w want solidarity.

They don't have scars from surgeries that are raw and sore. 
They don't have tattooed dots on their body telling the radiation technician exactly where to aim that laser. 
They don't spend hour after hour in the bathroom puking their guts out just because they thought they smelt something. 
Their hairless arms aren't covered in bruises because some nurse can't find a vein. The vein can't be found because it is either so scarred from being poked so many times or you are so dehydrated that you could drink a river and you would still have flat veins (remember that puking?). 

I don't want solidarity. 

These people don't live every day with the threat of relapses. There is no fear that they will lose their hair again. They do not take a deep breath when call ID says, Dr. Kraemer's office. They don't fear the next lab report or scan report. They don't know the taste of "Banana Smoothie Barium Sulfate Suspension" nor do they know what a nuclear chaser is. 

I don't want solidarity.

They don't hear the clicking sound of MRI or CT scan machines in their sleep. 

I don't want solidarity.

They don't see a scar on their body every morning while dressing to remind them they have cancer.

I don't want solidarity.

I have reminders all over my body that I have cancer and that it will never be cured (although I do hold out hope). I have a port, a scar on my sternum, I think I counted ten tattoo dots on my tummy and a few more scars on my back that thankfully I usually don't see. 

I don't want solidarity.

But let's get back to the bald part. Hair is a HUGE identifier of who we are as women. I have struggled with my hair my entire life. I've never liked it. It's always been the wrong color, cut, texture, too straight, thin, etc. Then I lost it all and when it came back it was going to get new hair. NOPE! I got the same mousy brown thin straight as a stick hair I had before. But I had hair and for that I was thankful. But more importantly it said I was HEALTHY! Chemotherapy drugs were no longer coursing through my veins. 

In fact the day before this gal's hair cut went public I got a note from a male friend via Facebook,

"I saw you in the choir at Stake conference and thought, "Wow, her hair is getting long. That is soooo cool!" Not just for fashion, but what it means for your health. So glad you are still with us."

Hair means health! It doesn't mean solidarity.

Hair means I won this battle!

Those who shave their heads in "solidarity," I get you want to show support. I understand that and it might seem like a great idea and be the only thing you think you can do. But please do not pretend to know what it feels like. 

Bald means cancer is winning but I'm putting up a fight. Bald means the fight is still on. Bald mean sick. I see this every time I walk into the clinic for a check up. There is always someone who is standing on the doorstep of death. Plugged into a "dance partner" that is silently killing them. I just pray that they fight back and say, "Not today, Cancer! Not today." But if they give up, I totally understand the desire to go through those doors. I've been there. 

Cancer sucks!
Cancer kills!
Chemotherapy sucks!
Chemotherapy kills!
Baldness sucks!

Please don't show me your solidarity by cutting off your hair. But if you do donate. But I'd rather you keep your hair and donate your money so a researcher can find a cure.  Donate so a patient can afford to take a cab to the clinic. Donate! I really don't want to see your bald head and you don't want to see mine (although I do have a darn good looking head). I really want a cure for cancer.

I don't want solidarity. 

I want a cure for cancer! That's what I really want! 

Click the image to donate. 

Click the image to donate. 


The Tale of Two Patients

One of the great opportunities a cancer patient has is to visit the doctor often. Since we are close to some important anniversaries I get to visit many doctors' offices this month. Recently I was in an imagining office and I had to wait about 90 minutes for some Beryllium to work it's way through my  body. 

In walked a large man with his wife. He was using a cane and was having great difficulty walking. He was slow and prodding. I actually felt empathy for him and his wife. He looked like he was in pain. Then I heard him talk. 

"We can't sit there! The sun will shine in my face," he said a little too loud and sharply for my heart. "Didn't I tell you that I wanted to sit with my BACK to the window. Find a different chair." 

Now there were about five groupings of chair, and only a few were taking and most were away from the window.

They sat down and were behind me. I tried to ignore them, but he wouldn't speak softly and it was hard to ignore him. His words to his wife were not very kind and actually made me cringe. She would read off the questions and he would answer.

"When was your last MRI?" she asked.
"You were here with me, don't you remember?" he replied.
"How much pain are you in now?" she would read from the sheet.
"I'm off the scale, can't you tell!" he replied.

Many more questions she would quietly read and he would loudly and rudely answer. He was belittling to her and I almost stood up and said, "How can you treat your caretaker so rudely? She is only trying to help." The person who was sitting across from me looked up at me and we both kind of rolled our eyes in agreement in acknowledging his rudeness to his wife. 

It continued when the receptionist came to him and told him that he had more paperwork to fill out and that his test will have to be pushed back 30 minutes because he was late by 30 minutes. (Beryllium has to take it's time through your body.) His words to her were some of the harshest I've heard from a human being towards another. She was more than professional. She was kind and understanding and even asked if rescheduling was necessary. 

"Are you crazy? I would have to drink this (insert a bad word) again. I will just sit here and watch this (insert another bad word) TV program." They had a PBS program on Hawaii playing and I though it was very nice and calming in a waiting room full of anxious patients.

She walked away so professionally.

Now on the other side of the room was a man about my age who obviously was in a lot of emotional discomfort. He didn't want to be there and he didn't want to do what some doctor has asked him to do. On top of that because of whatever he was there for he had to do a lot of waiting.

Nurse #1 took him back for a set of tests. He was very kind to the nurse. He then came back out to wait for nurse #2 take him back for another set of tests. He went back for those test and returned.

The nurse #1 came back and said, "The tests didn't show what the doctor wanted so we need to do them again." He stood up and went willing with the nurse. He returned shortly with yet another bandage on his arm. (He must have had some sort of IV contrast.)

Then the nurse #2 came and told him that his films were ready and handed him a CD. He said something like "I thought my doctor wanted films." She then said, "Oh, right. That's my fault. Do you have a moment to wait for me to print them out?" He said, "Of course."  

She returned with the films and he graciously took them and walked out of the office. 

These two incidents happened at the same time. Both patients didn't want to be there (I didn't either), and the way the staff worked with them was the same gracious and beyond kind. I'm sure the quiet gentleman wasn't there for good news, just as the loud man wasn't there. None of us were. But attitude means a lot! 

 

High Five's All Around

I wish I could give you a high-five right now!  I truly do!  This month marks five years from the most horrific day of my life! It is even worse than the day I was in an auto accident (it wasn't my fault), the day my sister died, the day my father-in-law died or the day my mom died. It was August 27, 2009! It was the day Dr. Kraemer told me I had cancer. He said a bunch of other stuff but it sounded like this, "You have Non-Hodgkin's Lymphoma, blah, blah, blah, keep you alive until there is a cure, blah, blah, blah. There is radiation, blah, blah, blah, and chemotherapy, blah, blah, blah."  I heard "You are going to die."

That's what made it the worst day in my life!

But I made it to FIVE YEARS!!! 

Why is that significant? Because I the statists say that 31% of the people with NHL don't see five years. And I'm one of them who DOES!!! Raise the roof!! I made it!! 

So if you see me, how about a High-Five! 

Birthdays...

September is Blood Cancer Awareness month. How appropriate that it also be my birthday month.   

Not many people, especially woman, want to acknowledge their years once they are over 29, but let me burn the house down with forty-four candles!  

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Four Years....

It has almost been four years that I have traveled this journey called cancer.  I have learned a lot, gained a lot and lost a lot.  I have cried a lot and smiled a lot.  These past few months have been a roller coster of emotions.  We are coming into what I want to call the longest year.  it is the year that leads up to the bench mark of five years.  Why is five years so important? Five years marks the spot where statistically the odds jump and are in your favor. A whole bunch of statistics start to be in my favor.

For patients 45 and younger (barely make that one) my survival rate goes up to 78% after the five year mark if I don't have a relapse. In fact that went up at the two year mark, but I didn't want to celebrate too much!

For patients with an agressive NHL (which I have) the survival rates go up and relapse go down after five years.  

(Now it should be noted that scientist and doctors use the 5 and 10 year marks as a marker but it gives patients hope and a gauge for recovery.) 

So here I sit within two months of my four year mark--August 2013, and I'm looking back at the journey I have traveled.  What a journey.  I'm not ready to close the book; I don't think that will ever happen until there is a cure, but I'm ready to face this next year. One that is full of anticipation and trepidation for me.  Every blood draw has a heavier sign of relief. Every scan is dreaded even more. "What if they find something?" is a question I ask. 

Well, I had my end of the three year scan and it did show something. I have a node in my right pelvic region that has grown just a bit. It went from 1 cm to 1.3 cm. Now that dosen't seem like a lot, but it is 30% bigger than it should be and that is a LOT. I know I shop for sales that are 30% or more!   

The first scan was back in March and then we did another scan the beginning of June and it showed the growth so I went in last week for the all telling PETCT scan. (This is the one where you are on a high protein diet--no carbs-- and then you drink a sugar drink--GROSS!--then they shot you with a nuclear medication and then they scan you. The nuclear medication will go where there is cell growth and it will "light" up the screen.  Well the results are in and the screen lit up on a very little bit.  Doctor Kraemer isn't alarmed just yet and he wants to just watch it and scan again in September.  

I'm not sure if that is a sigh of relief I just let out or a sigh of "not again".  Anyway, I can move forward with my life. 

I know many of you complain about the mundaneness of life, but enjoy it; there are far bigger worries out there.   

42

Well, I turned 42 a few weeks back and had publicly stated that I was going to run 42 miles (to Seattle and back) for my birthday.  Well, I sort of did it.

Here is the story:
One day while on a 4 mile run (those are easy now), I couldn't shake the email I got from a friend about a little girl with cancer who had passed away earlier that week.  Here I was celebrating one year remission while a little girl didn't get to celebrate her fourth birthday. I was going to be turning 42 in just weeks. That more than 10 times longer than that little girl got to live. I also was (still am) having a hard time raising money for my next run. I had to do something. I made up my mind to run the Burke-Gilman/Sammamish River Trail for my birthday. It had to be close to 20 miles there and back.  I've run almost every part of it, except the top part and I would like to do it from Marymoor (home) to the end (Gasworks). (I know it isn't the "end" but that is a good "end" in my mind.) That would make 42 or so miles.

Without talking to my husband I posted it. Now it was public and I was stupid ambitious. My husband of course read about it (I didn't want say those words to him) and he told me I was silly.  He didn't say much else (I think he knows better) and just let me go about thinking I was going to pull it off.  He didn't even offer to help me (no water stop etc), but pick me up when I died.  We sort of talked about it, but for the most part he just shrugged it off and never really offered any support.

When it came time to put rubber to the trail, things changed.  The day before my long run we held a family council. (Yes, we hold weekly family council; we have to, we have kids going every which way and if we don't...well, hell breaks loose anyway, I just don't want to see what it would be without it) and the kids brought up a few good points on why I shouldn't run 42 miles the next day.

1. No medical tent at the end of the race.
2. No water stops.
3. No coaches or teammates to push me (or stop me).
4. It was the last day before Kray went off to college and he didn't want to spend it in the ER with his mom.
5. We had promised the kids a day on the town and still hadn't paid it and it had been about three summers.
6. No one wanted to cheer me on or help me.
7. I had already run 26.2 miles and was going to add another 26.2 miles during the year I turn 42 and that added up to MORE than 42 miles.

So I compromised.

I got up at 5 and ran until I hit the detour on the trail. My fear of getting lost (I have a HUGE fear of getting lost) over came me and I called Steve to come get me.  I had spent 2 hours and 30 minutes running and covered 14.3 miles that morning. I truly felt like I could have run another two hours.  I was home before the kids were all up, showered and ready for our day at the EMP.

As I thought about it I decided that during my birthday month, September, I was going to run those 42 miles. So, here is my log so far (and I'm only counting my Saturday long runs):
Sept 5th 14.3 miles
Sept 10th 12.2 miles
Sept 14th 12.2 miles
So I have logged 38 miles already and this Saturday will probably get in another12 miles. So I'll be well over my 42 miles for my birthday month.

But the whole reason I did this was to raise funds for my run in November. I don't want to beg or plead, because I'm awesome and can run so far, do it because of that girl who didn't get to see her fourth birthday.  That's why you should donate, not because I can run, but because she won't ever.

Doreen's donation page

PS: just for fun my log books says that for the year of 2011 I've run over 575 miles!

A Hard Week

Some days are harder than others and today is just one of those.  It started about a week ago and I just can't shake this sadness in my heart.

First, you have to know that I had a blood draw on Monday and those always worry me.  I got a call back on Wednesday and although my white blood count is down to a 2.6, the doctor isn't worried and hasn't scheduled a scan. I just have to come in for my next blood draw and exam (two separate appointments). I should be happy about this, but for some reason, I'm just not. I think I'm a little scared.

Well that sacred feeling is the second and third thing I want to talk about.

On Sunday a friend of mine passed away after having an asthma attack. She was only 37 and left four children, the oldest just a year older than my oldest.  This just makes me check on my life even once more.  Then this happened this week...

A "twisted sister" who had four years remission until earlier this year, heard the news that it was back. Now what is so shocking is that earlier this year it came back and so they did a bone marrow transplant and thought they got it, but her test just came back (like last night) and her cancer is back.  I just have one year under my belt.

All this together and my emotions are running hills.  Up one moment (test was OK), down the next (Makala passed), up one (doc doesn't want a scan), down the next (CW's cancer is back), down even further (attend funeral for friend), down even more (argue with family members) and so forth.  Yes, most of them are down.

I just can't seem to get a hold of my emotions and therefore the days get harder and harder. 





Seven months and counting--but I still have cancer.

I posted on my Caring Bridge page that my MRI scan and blood work came back clean! That makes seven months and counting!!! But then again who is counting--ME!!!! That great news, but they still don't know why the pain. I hope it is "growing" pains and that my muscle is starting to heal.

I'm still running to help with the pain, healing (mental and physical) as well as raising money. It seems like that is the only thing I can physically do to fight my own cancer. There isn't much I can physically do, but this I can do!

I need to make something very clear; my cancer is not curable. Non-Hodgkin's Lymphoma does NOT have a cure at this time. That is why it is so important for me to keep getting these clean scan and blood work reports. I have a very aggressive form of NHL and the reports of re occurrence aren't great, so I have to fight. I'm sort of sad that people I love and care for aren't as supportive as I thought they would be. I know I'm not in chemo anymore, but every day I wake to the fact that I'm still fighting for my life--every single day! Not a day goes by that I'm not fighting--FIGHTING FOR MY LIFE! I truly am running to save my life!

So to my friends and family who think the fight is over--YOU ARE WRONG! My fight will not end--it can't. I still have children to raise and grand babies to kiss! This is a very lonely battle. One I fight by myself every day. That's why I pray that my scans come back clean, why I run and why I raise money. My fight is not over--and yours shouldn't be either.

Yes, I did turn in my paper work and if I don't raise the money, it will come out of my pocket--I believe in fighting my cancer that much. Please help me. You can either donate here, send me a check and/or drop me a quick email to tell me to keep fighting. I save them or those days when I'm worried, feel really lousy or just need a pick me up--a reminder of why I should fight hard to stay alive long enough for a cure to be found. Remission is great, but cured would be better!

DIGNITY

Dig-ni-ty
noun
bearing, conduct or speech indicative of self-respect or
appreciation of the formality or gravity of an occasion or situation
worthiness
relative standing
a sign or token of respect


I don't have much dignity left after being subject to the medical horrors of body scans, X-rays, biopsies, surgeries, radiations, chemotherapy, and then being bald. But what little bit I have left, I would really like to hold on to. In the next 30 days I have to hop on a plane to travel and I'm not looking forward to the body pat down. See, I won't get a choice because I have a port. I will be probed once again and by someone who I don't have a relationship with nor with this person and I have any relationship after wards. I'm sure they will have little training and I'm sure it will hurt. My port hurts when I just bump it in the shower.

Rep. Sharon Cissna from Alaska knows exactly what I'm talking about. She opted for a 12 hour ferry ride from Seattle just so she wouldn't have to have a body search at Sea-Tac. I totally get it. I haven't even gone through it and I'm in tears already and I feel like I'm going to throw up. I don't like flying anyway and to add lemon juice to an open wound (yes that pun is intended) now they are going to pat me down like a criminal--all because I have a damn port in my chest!

What is so funny, is I'm not shy about showing off my port to those who want to see it. I just guess being forced to be patted down is something else altogether.

I hope I can pack my dignity in my carry on and pull it out once I land because right now I don't feel like I have any left.

It Finally Happened

The day started out so wonderfully!!

I went to the salon and had my eyebrows done because they grew back. That is a HUGE step in my mind in getting my life back. It felt so wonderful to talk "shop" with Glenna as she did my eyebrows and then showed me how to make them look fuller and not so "light" (they are growing in more blonde than what I had before). I didn't have make up on, yet, but I sure did feel a little more like a woman.

Then I went to Costco because our family is out of a few things and it is in the next block. As I was in the check out line a man looked me straight in the face and ask, "How are you today, sir?" I didn't correct him and just let it go. I didn't even let a tear fall down my cheek.

I knew that day would come, and I thought I would be OK with it, and I was until I called Steve. I called Steve to let him know and cry on his shoulder and I did just that (only his shoulder was holding the phone that I was crying into).

I thought I was tougher than that, but I guess not. Oh, well. One day my hair will be long and beautiful again.

It's My Birthday

June 30th Steve and I celebrated 21 years of togetherness. A few days later a son turned 15, less than a month later another son turned 13 and three weeks later my daughter turned 10. And today, September 6th, I turn 41. These are all wonderful things, things that I wasn't sure I was going to see a year ago. As many of you who read my blog know, last year around this time I was diagnosis with Non-Hodgkin's Lymphoma. It was ONLY stage 2 and supposedly very beatable, but there are stories all the time (and I've read plenty of them) of people going to see the doctor and finding cancer and within days they are gone. For every one of those stories I also read a story of someone in stage 4 beating the odds. I want to beat the odds.

Today as I celebrate my birthday I feel like I have beat those odds--at least for now.

Last year's birthday was a flop! Not only was I 40--the dreaded FOUR ZERO, but I had just been diagnosed with cancer and my father-in-law passed away on my very birthday. It was an awful day, actually all of August and September was awful.

This year was so different. Steve decided not to celebrate (you don't celebrate, but I can't say not remember--because we didn't forget) his father's passing and dwell on me and life instead. We did remember his father the day before and probably will do so for the rest of our lives. I know Steve loved his father and I loved him like my own father. He will always be near to our hearts and we miss him so dearly.

My day started out with an "easy" run. (There is no such thing when you live on a hill, but I tried.) And to make sure he was happy, I let Steve sleep in. I ate a light breakfast because I knew we were going to go to lunch. But first we had to go shopping. Steve and I decided to combine our birthday presents and buy a new bed set. We splurged and got one of those tempurpedic type beds. I sure hope that helps with these old bones. After we paid for it we decided that it was our birthday and Christmas presents for the next decade! WOW!! But we hope it is comfortable and helps us sleep better.

I then had a wonderful lunch at The Cheesecake Factory. It was my first time there and they even sang to me! I actually had a stranger come up after the song and tell me it was her birthday too. We then walked through Bellevue Square which we probably haven't done in ages. I think maybe five or six years for me, not so much for Steve (the Apple store is in that mall and he has gone there a few times).

Next to the grocery store for ingredients for Sloppy Joes as the kids were making me that for dinner. It was delicious! They even did sugared carrots. We were so stuffed that we passed on the cake and Alaskan Mud (it wasn't quite frozen). We'll have that tomorrow--celebrating an extra day.

Funny how a year ago I wasn't sure I would even see this birthday. I know this past year gave this birthday a different feel and meaning. Can't wait til next year. Happy Birthday to ME!

I don't know if I'm cured, and bringing up my health can bring me down

20. I don't know if I'm cured, and bringing up my health can bring me down

Cancers are a funny thing. There are curable cancers and there are incurable cancers. Even those who have had a cancer cured can be stricken with another type of cancer that may do them in. Cancer is still so much a mystery.

I know for a fact that my cancer right now is incurable. It can go into remission and be there for years, or it can come back and do me in. I don’t know and the doctors don't know.

If you want to talk about cancer and my diagnosis, treatment plan or prognosis, please ask. If I don't want to talk about it, I'll just let you know. I will let you know when I want to talk about it. There are days when I get good news and want to talk about it.

I want my caregiver to take good care of herself or himself

19. I want my caregiver to take good care of herself or himself.

Truer words were never spoken. I so worry about my husband and what is going on with him. He doesn't say too much to me. I know he cares and I know he worries, but he doesn’t talk frankly with me. I worry so much about him. I worry about his mental health and of course his physical health. I have been his "caregiver" for so long and now he is mine. I truly worry.

I also worry about the six other "caregivers" in my house. They mean the world to me and I want them to be taken care of as well. They don't talk much to me and so I worry. Please be kind to these young caregivers.

Please wrap them in your arms and prayers as well. Ask them how they are doing. Invite them over to play or hangout with your kids. Send them a card telling them they are loved. They aren't contagious--none of us are--so don't forget them. Be genuine and love them, because I worry about them.

I need you to understand if I don't return your call or want to see you

18. I need you to understand if I don't return your call or want to see you.

Sometimes I just don't want to talk. Please don't get upset if I don't call or email you back. I'll try to get back to all of you as soon as I can. I do love hearing your voice on my answering machine wishing me well on my next test or treatment. I love reading your comments on my blogs or in my inbox or even in the mail. I have saved those messages and often read them when I'm down or feeling alone and scared. Knowing that you reached out to me is what keeps me going. Please don't feel slighted because I didn't say thank you for the dinner or the note. Sometimes I just don't remember who dropped by or brought something by (or my kids don't remember). But I do thank you for the thoughts and prayers.

I don't know why I got cancer and I don't want to hear your theory

2. I don't know why I got cancer, and I don't want to hear your theory.

This I think is the second most important thing I want you to know. I truly, truly, truly don’t want you to tell me about the newest, greatest, or even the earliest research about how people get cancer. I know there are many theories and research documents out there on why and how people get cancer. I've read many of them and I continue to read them as people send them to me. This truly is one of the most uncaring way of treating me. I know they mean well, but it really doesn't help.

One tells me that by eating sugar I gave myself cancer. Not true. Another tells me that my negative thought gave me cancer. Not true. Another tells me….
You get the picture.
The only thing these theories do for me is tell me that I am the one who caused my cancer. WRONG!

Let's take the science argument first.

Science has proven over and over that cancer is a cell that went wrong and didn't follow the instruction manual in itsDNA. Every person has cancer cells floating in their body right now. Mine just happen to not be taken care of by the other cells and congregated in my lymph system. If it would have happened in my breast I would have breast cancer. My body couldn't stop the growth and rid my body of it in a timely manner. Your body (if you are cancer free) just happens to be working fine. That is how cancers happen.

"Cancer" is a big word that covers many "diseases". In truth there are over 200 different cancers and the list is growing as more research is being conducted. We do not say someone with a cold or the flu or with AIDS has an "infection" we give it a name. "I have bronchitis," or "I have the flu," we tell people. I have Non-Hodgkin's Lymphoma and within that "cancer" there are quite a few subclasses.

There are many reasons why a cell might go haywire and more than one is the "cause" of cancer. If that were so we would have it solved. And NO, the government and pharmaceutical companies are NOT conspiring to milk the populace out of millions. Are you kidding! DO you really think doctors themselves would go through cancer treatments if they knew there was a cure? DO YOU? This is ridiculous--plain and simple. My own doctor's wife is a breast cancer survivor and she happens to be his nurse. Do you think he would have put his wife through surgery, radiation, and chemotherapy if he knew the answer? He told me that if he knew the cure to cancer, he would give it away free, but if he was greedy he would then sell it and become the richest man in the world. Bill Gates would look poor compared to him. The doctors, government and scientists are not out to get us.

Let's take the personality and psychological argument next.

I actually had a person post a link to an article that said I got Non-Hodgkin's Lymphoma because I have a "loss of self-worth associated with the location". Since my cancer was found in my back, but yet the lymph systems is from head to toe, I'm not quite sure what this means. It also said that two years ago some emotional "trauma" happened in my life to make my system start to break down. I'm still trying to figure this out. Especially since even my aggressive cancer would take up to three to four years to "show" itself from the first haywire division of cells. Logically I'm not quite sure where this "research" is going.

I can't believe that there are those out there who even believe in this tripe. There is NO RESEARCH to back any of this up. Not one shred of truth to this hype. It only causes those who have cancer to beat themselves up for giving themselves cancer.

To quote Dr. Robert Buckman,
"Of all the reactions that cancer patients and their families experience, perhaps the most damaging and crushing is the idea that somehow the cancer patient might have brought the condition on himself or herself by having the wrong attitudes, thoughts, or personality. … but let me stress right away that humankind has always had a tendency to blame the patient for the disease, and there has been a recent upsurge of this in cancer. … [T]here are very many carefully conducted studies that show that attitudes, personality, life events, grief, and depression do not cause cancer at all (as opposed to behavioral patterns such as smoking, which does cause cancer). Furthermore, there are also important studies that show that changing your attitude and your thinking undoubtedly has a positive effect on your quality of life but does not change the behavior of cancer. Even so, the belief that somehow a diagnosis of cancer is a metaphor for some undefined "wrongness" of the person is a very subtle an powerful part of many people's reactions.
"So, for all those reasons, the word cancer produces particular and deep-seated feelings of fear and dread. That is why a book like this is needed--to explain and demystify cancer and its treatment and so reduce as far as possible those feelings of fear and helplessness. As has often been said, "understanding what's going on always makes things better." and that's especially true of cancer. A clear understanding will always help you fell more in control of your own situation. And by doing that it will really help you cope."

Please understand that I DID NOT CAUSE MY CANCER!!! It just happened and I have to live with it. I don't want your theories on how I got it or how to cure it. PLEASE!