Sunday, February 26, 2012

Closer I Am to Fine

I love music. All types of music. Although I tend to land on country, my radio stations are constantly changing. I always have a song in my head. I will hear someone say something, anything, and it automatically triggers a song. Sometimes I accidentally sing it out loud. Lately, I've had the Indigo Girls in my head. "Closer I Am to Fine." 

And I went to the doctor, I went to the mountainsI looked to the children, I drank from the fountainsThere's more than one answer to these questionsPointing me in a crooked lineAnd the less I seek my source for some definitive
Closer I am to fineCloser I am to fine
This song has so many memories for me. Mostly my college days. Singing with Fr. Pat at Search retreats, dorm parties, Bumbershoot, my girlfriends. But as I listen to the words again, realize it's more than a song to sing around a campfire. 
This has been a rough week. Maybe that's why I haven't written much and maybe that's why I keep singing this song in my head...keep reminding myself that all will be fine. And although I am only in the pre-game warm ups of this stuff. I am getting a little closer to fine. I have a few more answers, but also many more questions.
So, Tuesday, Fat Tuesday, Mardi Gras, I spent the day at OHSU. I joked on Facebook that I was revealing the tata's and hoped I would at least get some beads for this. Alas, they did not have any. But when I came home there were beads on my door...from my team. 
Tuesday was a long day. I had a biopsy done on the upper axillary lymph node that is farther away from my lump. This was much like the other I had. They just use a local anesthetic and use a needle to get some of the lymph node out to test. This appointment lasted a few hours and then I had the appt to meet the thoracic surgeon who would be doing the procedure to test the chest lymph nodes. 
This doctor finally took Nick and I to the computer to show us the PET/CT scan reports. The solution they inject via IV when you do these tests makes the areas light up. Well the nodes in my axilla (armpit) and the lump in my breast were very bright (a 9 on a scale of 1-10). But the nodes in the chest were quite dim compared to the others (only a 3 or 4, the dr said). I found this quite hopeful. They had many questions about where I have lived, did I smoke (NO!!!) etc. They were trying to make a suggestion of what these could be showing up, if not cancer that had spread. We went over the procedure and the details for the next day......
I would be sedated completely under general anesthesia and they would use a bronchial scope and endobronchial ultrasound to get to the nodes that were in the chest to take samples for biopsy. A pathologist would be in the room and test them right away. If they were positive, they would stop and procedure would be done. They would know the cancer had spread. If negative, they would try to reach the nodes farther in my chest. However, to reach the nodes that are farther in my chest wall, they will have to make a small incision at the base of my neck in order to get the scope in. So I could wake up with an incision. I actually took this as a good sign because if I woke up with an incision that, in theory, would mean that the nodes were negative and they were just double checking. Hey, I'm a teacher. I want people to double check. I send kids back all the time to check their answers. Anyway, I was prepared. 
Soooo, Wednesday, Ash Wednesday. I was fasting like any good Catholic would do. Ha ha. I had to. I was scheduled for noon, but they called us in early. This is all a hurry up and wait game. We were at the hospital by 9:30. We got back to pre-op pretty quickly. Nick was able to stay with me there, but it was noon when they took me back for my procedure. And that is all I remember until I woke up at 4:00. I do remember them saying they were going to give me something and then that was it. Not even any counting this time. 
I slept for 4 hours. And all I can think is how agonizing this must have been for Nick sitting in the waiting room. He actually didn't get to come back to see me until 6. I was still a little out of it. And the anesthesia made me a little nauseous. I was talking with the nurse when he came back. The nurses were constantly asking all day, "what procedure was I having, blah blah blah." I didn't want to keep repeating it. But that's how they know if you are coherent. So this time, as the nurse was asking about my procedure I felt my neck and said "Looks like they made the incision. That's good. Because it means that it probably didn't spread." It was at that point I saw Nick and he just shook his head. This was the first moment I realized that I was looking at something more serious. 
We went home. I was still out of it. It was so hard for me to have my kids see me this way. I am sure I did not look good. Nick had to help me walk and I had a three inch bandage on my neck. Evan came to hug me. But instead of his huge, tight hugs I normally get, he just barely put his arms around me. That was a little heart breaking for me. For the next few days, he would be hesitant to come near me. All I could think, was I hope that this isn't how it is going to be. This was only the first time. Honestly, I can't even remember what Justin and Ally did. I just went to sleep. Got sick some more. Went to sleep. Got sick. And finally went to sleep. 
The next day,  Nick got the kids ready for school. I went downstairs. They all gave me little hugs...still not the big ones I am accustomed to. Evan kept asking, "Is it ok?" Ally wanted to see the incision. And Justin was very doting. "Do you want some water?" "What can I get you?" He is growing into such a great young man. 
My sister, Pam, came to spend the day with me so Nick could get to work. We had a good day of me dozing and just talking about "things." I finally said it to her that I thought the cancer had spread. We cried. Then started talking about everything else. I liked it like that. 
Later that evening, I had Nick tell me everything from the day that I missed. All the calls the doctors made to him while I was in surgery, the dr coming to meet with him and take him to a consultation room to tell him what they had found. I imagined something right from ER here. Dr. Green talking to Nick. But I felt so bad that I couldn't be there with him.
And yes, the cancer has spread. Then why did they do the incision anyway? I knew the answer, and again as a teacher, I am glad they checked their work. So, I now know that we are looking at Stage 3b metastatic breast cancer. Of course this is "according to the papers." I am glad I know, so that they can form a treatment plan for me and get me closer to fine.
The last few days I've tried to go on like everything was ok. I think everyone could tell that I was a little off. I went to the PTA board meeting, went to book club on Friday night (I had to hang with my "old sames"), went to softball coaches training on Saturday morning and sold Girl Scout cookies with Ally. I want to continue without having to disrupt things that are going on. But, I didn't quite feel right. I have been reading. And I know this is normal to feel this way. But honestly, I wish that life could be normal. But I guess this is our "new" normal.
Fast forward to Sunday night and my bandage is off. My two inch incision is exposed. Evan isn't so scared and I get the biggest hug from him when I tuck him in. Justin is still careful and hugs gently and Ally asks if she can touch my incision. I love her. 
I think this week will feel a little more like regular normal. We have a packed schedule, basketball practice, softball meeting, Girls Scouts, Justin's technology group, church, and other things. It is all par for the course in our life.....Except for my Thursday appt at OHSU. That is the "new" normal. But it is at that appointment that these doctors can give me a treatment plan that will get me a little closer to fine.




Monday, February 20, 2012

Hanging in there

"For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." ~ 2 Corinthians 4:17


It has been a nice, long weekend. I have been able to do a lot of thinking, and not thinking and coming to terms with whatever may come my way. I have definitely had a roller coaster of emotions, but I guess that means I have hope. At least that what the books are telling me. 

Nick and I snuck away Saturday for a lunch date in Portland and then ended up at Powell's books. I love this bookstore. It really does have anything you want. I love going to the Rare Books room. I held books in my hand from 1829, 1855, 1932..and many more. Excuse the pun, but I'm sure they all have such a story to tell.

We ended up in the Health section. I was looking for a specific book that my co-cancer conspirator friend recommended, but I ended up finding others that have been pretty helpful and some that I can comfortably read. Mostly I was attracted to the titles "Cancer is a Bitch," "I Am Not My Breast Cancer,"Finding Hope for Your Journey through Breast Cancer," and Nick's pick "Crazy, Sexy Cancer Tips." (He is male...sex generally creeps into his mind.) 

All the books have offered me something already that appeals to my practical, realistic, comical and faithful sides of me. Reading these books I realize I am hopeful. I have always adhered to the mantra "It is what it is." I take what life deals me. Freak out a little bit. Get mad. Stress. Feel hopeless for a bit. And then I think about it and react in a practical way and deal with it. That is how I will look at this cancer too. Yes, I am scared. I am still going to freak out. Ask the questions. Want the answers. But I will also know that I need to just deal with it. 

Anyway. Tomorrow I go back to the doctor for another biopsy on some of the axillary lymph nodes and then meet with the pulmonologist who will do the biopsy of my chest nodes (not the breasts) on Wednesday. It will be another long day at the hospital, but I know there are many more to come. It is odd how it starts to feel normal. Just like when Evan was in the NICU. Going to the hospital every day for that month became easier and easier and I know this will too. 

Thank you for your continued support and prayers. It really does make me feel like I am not going through this alone. 

Below are the lyrics to MercyMe's song Move. I heard it on the way home from church the other day and was very "moved". It has become one of my theme songs.


I'm not about to give up
Because I heard you say
There's gonna be brighter days
There's gonna be brighter days
I won't stop, I'll keep my head up
No, I'm not here to stay
There's gonna be brighter days
There's gonna be brighter days

I just might bend but I won't break
As long as I can see your face

[Chorus:]
When life won't play along
And right keeps going wrong
And I can't seem to find my way
I know where I am found
So I won't let it drag me down
Oh, I'll keep dancing anyway

I'm gonna move (move)
I'm gonna move (move)
I'm gonna move

I've got to hold it steady
Keep my head in the game
Everything is about to change
Everything is about to change

This hurt is getting heavy
But I'm not about to cave
Everything's about to change
There's gonna be brighter days

I just might bend but won't break
As long as I can see your face

[Chorus]

No matter what may come
Gotta move to a different drum
No matter what life brings
Gotta move gotta move to a different beat [x2]

I just might bend but won't break
As long as I can see your face

[Chorus x2]

No matter what may come
Gotta move to a different drum
No matter what life brings
Gotta move gotta move to a different beat

Saturday, February 18, 2012

Life Goes on.....

First, Thank you everyone for your many thoughts and prayers and offerings of help to my family. I am so overwhelmed and grateful for the tons of support that has been offered. But most of all thank you to everyone who has shared stories of survival. This is what I will hold on to. The hope that this will not beat me...it will not win. 

Someone who knows a lot about pain and suffering posted a picture on Facebook today of a whiteboard in a middle school gym. It said." Pain and Torture will be your BFF today. Sucks for you." Yep, sucks for me. But these last few days I have had some time to think this over. I have cried myself, with my family and with Nick. This sucks. Sucks, sucks, sucks. But life goes on. Sure I don't know what the new biopsies will show, but for the next few weeks until I know, I will endure some pain and torture as they biopsy more armpit nodes on Tuesday and then sedate me to test the chest nodes on Wednesday. Then more mental pain and torture of waiting for the results. 

But, Life will go on. I will still sell Girl Scout cookies with Ally, take Evan to his basketball practice and games, get them up for school, pay my bills, make them dinner. On Sunday I will go to church and  I will take comfort in the fact that as a Christian Catholic we are going into the most precious time of year. Lent. The 40 days of Jesus' suffering and where we prepare for his death and then Resurrection. I don't think that I am going to give anything up this year though. I think God will give me a pardon for that. Because I am probably going to need that chocolate. I know some don't believe...but I do believe that Jesus suffered and died for me. He will take care of my pain and torture. He will hold my hand as I lay on a table being poked. I will go into Lent knowing that his death and suffering lead to the ultimate Resurrection that was done so that we all can live.

But I will also take comfort in all that has been given me and know that there are many, MANY people praying for me. For ME!!! (still hard to fathom). That is what this Lent will be about. I will celebrate another birthday (Ally's as well). And although I have a horrible diagnosis and disease that may not be curable, I will know that life goes on and that life is going on with so many people comforting me. I will still get up in the morning, have my coffee (very much needed), get my kids off to school, go to work when I can and give hugs and loves and kisses to my family. Life goes on, so I will change the cat litter box, do some laundry, cook some dinner (or order pizza), and just live. 

Again, thank you all. And thank you for letting me be emotional and all over the place on here. It has truly been helpful.

Thursday, February 16, 2012

Surprises

I do not like surprises. I have only been surprised on rare occasions. But generally I find out before anyone can surprise me. Some of my more memorable surprises- my 19th birthday in the dorms; my first pregnancy, my third pregnancy, my 30th birthday party, my cancer diagnosis and let's see...Today. 

Today was a day of suspense and one big surprise and then harsh disappointment. 

I went to OHSU to meet my cancer care team. One of my friends with cancer said it well when she likened the day to an upcoming holiday or your birthday. There is big news coming.  News just for me. Despite some rough days this week, I had already accepted that I had cancer.  Now, I was eagerly awaiting a plan. It was to be an end to these long two weeks. And a start to a journey. I was mostly calm as we checked in and became very impressed with OHSU cancer center. They greeted us and made sure we were comfortable every step of the way.

First, we met the patient care coordinator I have been on the phone with all week. Very nice, a little sarcastic, but I liked that. She lightens the mood. But yet, he has really been getting the coordination of things done. Next we met the breast surgeon. Dr. Naik. She went over the pathology reports and the CT and PET scans. She was very thorough in explaining the course of treatment. So it looks like 3 months of Chemo,heal for 3-4 weeks, surgery (mastectomy and reconstruction) heal 3-4 weeks, and then radiation. I will also need to take an additional drug called herceptin because I am HERS2 positive. OK this wasn't bad. Much what I expected after talking with some others who are going through or have gone through breast cancer.  I wanted to know when we could get started. 

Then came the big HOWEVER!  

HOWEVER, your ct and PET scans both showed some abnormality in the lymph nodes in the chest.

 HUH?? WHAT??? 

Medically speaking (and straight from the report) "A left hilar lymph node anterior to the aorta measures 6mm. An additional left hilar lymph node measures 6 mm in short axis and adjacent to the left common carotid artery at the thoracic inlet there is a 5mm lymph node with hypermetabolic activity,suspicious. There is residual thymic tissue in anterior mediastinum that are concerning for metastatic disease"


What does this mean? It means that there are other lymph nodes that appear suspicious and additional biopsies are needed to rule out these having cancer cells. If they aren't we proceed with previous treatment described. If they are malignant, then my cancer has spread and a new treatment course will be needed. The big word is metastasized. 

I met with two other oncologists as well. Dr. Chui and Dr. Duffy. (I wanted to tell my kids that Chewbacca is my dr.) Anyway, both very kind but very serious and honest. If my biposies come back positive for cancer cells, there may not be a cure. FUCK! I don't say that word...ever! But I have to say it now. There has to be a cure. 

So, I am now referred to a pulmonary oncologist to do a biopsy of the nodes near my lungs and then I will be doing additional biopsies of more lymph nodes under my arm. They want to know if the cancer did indeed spread. 

So all I can do again is sit and wait to see if this cancer is taking over my body. Not going to start treatment....yet. I don't even have a treatment plan.....yet. Don't I have to start getting rid of this stuff NOW! They say it doesn't appear to be growing, but the flip side is. I have to sit and try not to imagine the worst possible scenario........My families life with out me. Because that is the ultimate. I hate to say and I am sorry to be so honest. But it is a reality that could happen. 

I am still going to think happy thoughts. Think positive...mostly. But I can't always stop other thoughts from coming. I am walking around numb. The emotions come and go. I went to the store on the way home. (We needed milk, you know.) But when the cashier asked how my day was going I said "pretty good." I wanted to say "pretty shitty actually. Just found out my cancer may have spread." Wonder how she would have like that? But that isn't me. I will smile and know that I am strong and tomorrow I will be stronger than I was today and when they put a scope down my throat to biopsy my lung and nodes...I will be strong. 

But sometimes strong is hard. Then into my head pops Kelly Clarkson: 
"What doesn't kill you makes you stronger
Stand a little taller
Doesn't mean I'm lonely when I'm alone
What doesn't kill you makes you fighter
Footsteps even lighter


My head does some weird things. But let's just pray that the positive thoughts stay there because I don't want to think of the alternative.

love :)




Tuesday, February 14, 2012

Not such a lovely day...

Today was hard. HARD. It was the first day that I felt like a patient.

The day started out fine and normal. Got the kids off to school. Came home and got their little Valentine gifts together for them to have after school. Did the dishes, cleaned up a little...blah blah blah. Seemed pretty normal. Except I am fasting for my PET and CT scans so no yummy latte for me. This would be part of today's problem. Anyway, I then went for my MRI.

The MRI was at The Vancouver Clinic so I drove myself. I have had an MRI before. On my arm and on my ankle. Those weren't too bad. No problems. But then again one was an open MRI and the other was only my foot sticking in the long hollow tube with a 24 inch circumference. Today, the positioning was much different. In some sado masachistic style the technician placed me on my hands and knees with my face down in a face rest much like that on a massage table. Except this was no massage. I was uncomfortable and suddenly began to feel overwhelmed. I lost it. I simply lost it. It was the first time that this seemed real to me. Here I was with an IV in my arm, looking like a dog and being rolled into a long dark tube in which I would have to stay in this position for 30 minutes without moving. I couldn't do it. This is what hyperventilating feels like. Or so I thought. I know that nothing would happen to me in there. It wasn't going to close in on me. But I could not emotionally let myself be rolled into this tube. This is claustrophobia I guess. One of those irrational fears that I couldn't talk myself out of. I left without having an MRI. Immediately text Nick and told him I needed him to come with me for the PET/CT scan. I did call ahead and make sure that it wasn't the same. At least this wasn't a hallow tube. The PET/CT scanner is more like a big Cheerio in a room with lights changed color. Although I did have a brief freak out moment. I made it through this.

Going to OHSU felt so weird. The last time I was there was to see my dad after he had a heart attack. Now here I was the patient. I have to tell you they made me feel very welcome the moment I checked in at radiology oncology dept. But once I was back in the small prep room where I would have my second IV for the day I became a little overwhelmed of my reality. But this time, the technician talked me through it. Told me everything. Did things on my cue. Let me calm down. Had me drink some weird tasting water with a special ingredient to make me glow in the tube. (32 oz of this stuff. This is why it is called nuclear medicine I guess.) Then he let me sit in a big comfy hospital recliner for an hour under a warm blanket as all that radioactive glucose coated my insides. Then the scan. Fun stuff. Not so much.

But man I was exhausted when I was through. And bless his heart, Nick had to just hang out for two hours. I love him. Then he took me to dinner after. Since I had been fasting all day. It was a nice dinner...in the hospital cafeteria. I was that hungry.

It was hard to be the patient. I had to sit there and let someone else take care of me. Even as I sat in the big comfy chair, supposed to be relaxing, I was thinking about if Nick and not wanting him to be too bored. I was thinking about if the kids made it home ok and if Grandma Mary would be there to feed them dinner. And of course everything was fine. But I still worried about them.

Today was hard. But tomorrow is a new day. That's what I will tell myself. We meet with a oncology surgeon in the morning and then another try at an MRI (this time with a relaxer) tomorrow night. But I will smile and know "That I can do everything through Him who gives me strength." Phillipians 4:13

Night.

Monday, February 13, 2012

Twas the night before Valentine's Day,

So, tomorrow is Valentine's Day! The Valentine's are addressed, the BINGO game is ready and I can relax.  Yeah right. I was supposed to go help in Ally's classroom with her Valentine's party. Broke my heart when she started crying when I told her I wasn't going to be able to help. My appointments are already getting in the way of activities. I have an MRI at noon and the PET scan at 2:45. This is the reality I am faced with now. This cancer is going to run my life...my families life. Notice I did not say "ruin" my life..but "run" my life. I am not going to let it "ruin" my life.

One of the hardest things this past week is learning to let go of things and know that it is OK to say NO. This is hard for me. I don't say no. I am a doer. I like to be involved. I feel that things may not go on if I am not involved. I like to know what is going on. That is why I volunteer for activities and I am the "yes girl" for so many things. But I need to learn to say no. I don't want to say no. It ticks me off that this cancer is making me choose and change things that I want to do. I probably won't coach Ally's softball team again this year. How do you throw a softball after a mastectomy? That is my reality. Sure, I don't know my exact course of treatment yet, but truly I will not be able to do this. But, I don't want to tell anyone. And I haven't officially told the team or the league. I don't want to let all those little girls down...to let Ally down. Just another example of how this cancer may "run" my life.

Another thing I hate...I like to have things planned out. I can't do that right now. I seriously have four different calendars that I write in. (and yet I still forget things). But this cancer...it won't let me plan anything right now. Just doctor appointments. It is so incredibly frustrating. Because truly, I don't know what to expect. Ugh!

Deep down I know schedules will work out and Ally won't hate me for life for not being at her party or coaching her team again. And although I know that I can make it through this, it still sucks. It is becoming more of a reality. I have cancer. I have said it more lately. More people know. But it still sucks. But tomorrow, I will smile because it is a day of love. A day of friendship and a day of caring.
SO~
Happy Valentine's Day! I have been saying this to my valentine for 20 years. Yes it really has been that long. Where has the time gone? We have grown up together. I have been with Nick for more than half of my life. And believe me I plan on being with him for many more years.

Friday, February 10, 2012

Pink is my new favorite color.....

I always said that I would never start a blog. In fact, I am not sure how I got here. I never thought I would be here. I don't want to be here.  Nonetheless, here I am because I need a place to get my thoughts out. You see, I was recently diagnosed with invasive ductal carcinoma. What is that? That is breast cancer. Not just breast cancer but BREAST CANCER. 


How could this have happened? I am only 36..ok 37 next month. I am rather healthy...a bit overweight, but otherwise healthy. I have 3 kids. This isn't supposed to happen to a 36 year old mom with three kids. 


So, how did this all happen? Well, in August 2011 I felt a lump in my armpit. When I had my yearly exam (you know what I mean), I asked the gyne about it. She said it is probably just a swollen lymph node due to stress. Keep an eye on it and we will recheck it later. Well, I believed her. But I didn't go back in 3 months to have it checked. It wasn't until I felt another lump and an "old" (by old I mean 35) mission trek friend announced just after Christmas that she had been diagnosed with cancer. Lump was in the same place....so I thought I should go back. 


Although still convinced it was probably just swollen lymph nodes due to stress, my doctor sent me to do a mammogram. Being only 36 I have never had one of these before. It wasn't too bad. I can't say that I enjoyed having my size 40 H (yes that is correct, not a type O) breasts squeezed, moved around and pushed with 15 pounds of pressure as the sweet older lady doing my exam would say, "Don't Breathe. Don't move" Sure, easy for her to say. I go through that..The doctor in radiology looked at them and said, "Do you think you could do that ultrasound now." Sure.


Let me tell you, an ultra sound on your breast is not as fun as an ultra sound you have when you are pregnant. I kept waiting on a little heart beat to show up on those little masses the technician was showing me. You see. When they did the mammogram, they found that connected to the lymph nodes in the left axillary tail was a lump. A lump that I never really felt because of my nature to be so well endowed. If I wouldn't have gone in to ask about the lymph nodes, if I wouldn't have had this mammogram, I would never know that a lump existed.


At this point, the breast care center doctor was called in and she informed me that they would like to biopsy these spots and could I come tomorrow. This all happened so fast. Mammogram, ultrasound, and then biopsy all in two days.


Nick came with me to the biopsy. They biopsied two areas and drained a cyst. Since one area was a cyst, I began to feel that I the others would come back as cysts or fibroid tissues. I had to sit on this through the weekend, but still felt confident that all would be good. 


I made it through the weekend. I went and worked with my kindergarteners on Monday. I kept myself distracted all day knowing that I would need to call nurse Joan at 3:00. At 3:30, I called her from the parking lot of the school. You would think I would have went home, but at this point I was still convinced that this was nothing. I was more worried that she would tell me that it was fibroids and I would have to cut back my caffeine consumption. I was more worried of not being able to frequent Starbucks. Seems pretty petty now.


I told family, I told my prayer Sisters, I told my kids. But I haven' t told anyone else. But now five days after diagnosis and a second opinion, I am ready to let it out.  I HAVE CANCER. I actually shouted it in the shower today. No one was home, the house was quiet, but I just needed to shout it. And now, I shout it here. 


Next week, I have some blood work, a MRI, a PET (CT) Scan and meet with a team of doctors at OHSU. 


I am ok. Nick has been amazing figuring out insurance stuff and my kids took it pretty well. They really don't know what is going on. They just thought it was particularly funny that I kept saying breast. And I should add that when we told them Nick says "Remember, We are all in this together." The kids and I crack up and instantly start singing  High School Musical. "We're all in this together." Zac Efron would be proud. That' s how we are. Put a spin of humor on it and it all seems ok.


Now, I am going to keep on keepin on. I will work. I will go to my kids sports games. I will smile. This is my life.


Since this has happened, I keep seeing all these great posts and quotes. Here is my favorite one this week.