Friday, November 2, 2012

9 months



I can't believe it has been nine months since that awful day of my biopsy. Nine months today. It feels so long ago, and yet it feels just like last week. So much has happened in nine months. There have been many ups and downs in these nine months. Good days, bad days, and just days. I now it has been a long while since I have posted anything. and believe me, I have been scolded for this. But life was going on. Summer came and went. School started. I am working (subbing) again. Soccer season is almost over. And now, just like that, it is November. Twenty days until Thanksgiving. 53 days until Christmas. But really, I don't want to think about that. I am focused on November 21. I will have another scan. The last scan I had was promising. The cancer was no longer visible in the chest and neck lymph nodes. But still very prominant in other lymphnodes. I am still going to chemo infusion every three weeks. And, I take my tykerb and femara daily. I have now added aleve to my daily drug intake. My meds are making my joints ache like arthritis. I look like I am 80 every time I get up. Most days I am doing alright. Aside from the fatigue that hits about 7:00 every evening. I get through my days. But with that said, cancer  is overwhelming and I want it to go away. I didn't ask for this. So, why am I the one going through this? Why am I the chosen one? I can ask myself these questions over and over again, but I doubt I will find the answer. I like to just say it is what it is. That has been my motto for many things that have ever gone on in my life. I am not complacent, or in denial. When a hill comes along, I climb it. When a struggle comes along I deal with it. There is no room for a pity party. Don't get me wrong, I have my moments. But they last just long enough for me to get the angst out and then deal with it. Is there any other choice? So, I have done just that..gotten over my moments and keep living life. Keep going to soccer games. Keep taking care of my family. Keep on going.

When I keep on going, I am busy. Busy with life. I didn't think I had much to say. Truth is, I wanted everything I say here to be inspiring. I haven't felt like I had much to say that was inspiring and that others would want to hear. I actually received an email from someone I didn't know. They had been reading my blog and were concerned that I hadn't written in awhile. Then a couple of other emails came. Some calls from some ladies at church. Another card in the mail from someone saying they were thinking of me. Then, I realized, there were more people invested in this, my cancer, than I thought. So, here I am. Back and letting you know how I have been. And all in all, I can say I am doing well...or as well as expected. In fact, to see me, you wouldn't even know anything was wrong. I don't look the part.

Cancer is a funny thing and people expect you to look and be a certain way. You see, I still have my hair. I guess I am the lucky one. And believe me I have heard this many times. "You still have you're hair. You are so lucky." Losing your hair seems to be the mark of cancer. Well, I don't do things normally. So, that's not my mark. I haven't even lost any weight. On the contrary, I am puffy and have awful nails. But my skin is looking good. I have to say it almost makes me feel guilty walking into the infusion center because I just don't look the part. But like "they" say, you can't judge a book by its cover.

Well, I hope to add more posts more often. And thank you everyone for thinking, praying, and worrying about me. It is humbling. I truly know I couldn't be going on without you. And Thank you God for watching over me and my family! Thank you!


"The Lord will watch over your coming and going both now and forevermore."
                           Psalm 121:8





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Friday, May 25, 2012

Short but Sweet :)





Oh happy day! 

We all know the words to this song...

Oh happy day, Oh happy day
When Jesus washed
Oh when he washed
He washed my sins away
He tought me how
to watch, fight and pray
fight and pray

Oh happy day, Oh happy day
When Jesus washed
Oh when he washed
He washed my sins away
We´ll live rejoicing
ev´ry day, ev´ry day
Oh happy day, Oh happy day
When Jesus washed
Oh when he washed
He washed my sins away

Yes, We all know the words to that song. In my head I am singing the Sister Act version. It is a happy day. 

I went to my oncologist yesterday. Things are promising. Although I have not had a complete scan yet, it appears that my treatment is working! The lymph nodes in my neck and the largest one in my arm pit feel visibly smaller. YAY! So, I will take the endless hot flashes, headache, nausea and tiredness if it means that we are killing this cancer!

I will have a complete PET and CT scan in July. But for now I will lean on this hope! All the fightin' and prayin' is working! Just like Jesus taught me!


The LORD is my strength and my shield; My heart trusted in Him, and I am helped;Therefore my heart greatly rejoices,And with my song I will praise Him. Psalm 28

Thank you Lord, Thank you Jesus, thank you everyone who is praying and fighting with me! Let's keep it up!



Tuesday, May 22, 2012

Keep on keepin' on!

Well it has been a few weeks since I last posted. Nothing has happened and so much has happened all at the same time. I'm still here. I am still hanging in there. I have a few more cuts on me. I like to think of them as war wounds. Since this is a battle I am fighting.


I know it has been awhile, 42 days to be exact, since I have written anything. I don’t really know why. There is a lot going on in my head, but I just haven’t been able to get it all out. And although I haven’t written anything here, I have been able to talk it out and vent with some dear friends. But I think too, I needed time to just be in my head. I needed the time to retreat into myself and just think about all that is going on. I needed “me” time.

I needed time to think. Cancer is overwhelming. And it is not just the fact that I have a disease in my body that I could potentially have for a very long time, but everything that goes along with it is overwhelming too…..the good and the bad. It is such an emotional roller coaster of everything. The actual disease, scheduling doctor appointments, going to said appts, surgery, infusion, recovery, being present for my kids, trying to just keep moving on in a normal way, the outreach and support from others, answering every one’s questions and educating them on my decisions, taking well meant advice, going on with life, going to sports games, paying bills, new bills, and really just figuring it all out. It is overwhelming just writing it all.

I know I have a lot of support. That is very evident. But when I go to the doctor and sit in that room, or when they poke me for the hundredth time, or when I am talking to the lady from the utilities trying to explain why the bill will be late, it is just me. I know that usually someone (Nick) has been physically with me. But it is still me and my cancer. This damn cancer that has changed my life. I can get mad about it. I can retreat into myself and wallow for a bit. BUT, I also know that it is what it is. Then, I snap out of it, and remember that the support of friends and having God on my side is all I need. But, I still have to remind myself of that.

I am a giver not a taker. I am the one who takes the meals and runs the race. So, having everyone do so much for me lately is hard for me. I am very grateful. Because honestly everything that has been done…the walk, raffle, auction, zumbathon, pampered chef parties, reunions, meals, etc. has truly helped me and my family. And for that I am truly appreciative. It really is still hard to believe that it is being done for me, but I have learned to accept the help and I am trying to feel worthy.
So where am I now in my treatment? Well, I am doing a hormone therapy right now. (Not hormone replacement) I had surgery April 11th to remove my ovaries. Why? To stop the flow of estrogen in my body. My cancer is fed by estrogen, so we are starving this cancer. I have had three chemo infusions. I take a daily dose of a heavy drug called Tykerb(lapatanib). And I also take Femara (letrozole). Another drug to stop the production of estrogen in my body. I’m going this route right now to try and get the cancer out of my lymph system and chest wall. Hormone therapy tends to cause fewer and less severe side effects than traditional chemotherapy. But it is not without side effects. I am very TIRED. My energy level drains quickly in the evening. I visit the bathroom a lot for various reasons. I don’t sleep well. I have hot flashes galore. I have headaches and sometimes blurry vision. And on and on. Luckily,(and my rainbow)I have escaped the awful side effects for now. I still have my hair. Although, I do notice more on my hair brush, and I do not have the horrible rash that the Tykerb can give you. But I am not counting it out yet. Other therapies such as radiation and other chemotherapies are not ruled out. We are just going this route for now. A surgery for mastectomy is about a year away. So I get to carry these melons around for a bit longer. I am in this for the long haul.
I have learned a lot these last few months. I am learning more about the different types of cancer and just how individual cancer can be. This is more than I ever thought I would know about breast cancer. Yes, it is overwhelming, and I really do know that I am not going it alone. I am still in awe of all the support that is there. But, if I don’t tend to write all that much, it just means I am thinking. 

So for now I am going to just keep on keepin’ on. 


Quote Book Pic
Mother's Day Gifts!

Tuesday, April 10, 2012

Here We Go!

Well spring break is over and we are on the down hill slide to summer. This spring break went pretty well. It was a successful "stay cation." I took the kids to OMSI, played miniature golf, went shopping at a few malls and Nick took kids to the mountain. We ate out entirely too many times, got to see how wonderful life can be with so many people to love and support us and will literally walk in the rain for us, saw Wicked, had sun for Easter and had my first treatment. All in all a good break.

Except for the treatment part.

Just when I think things are feeling normal, something with this cancer reminds me that "normal" has changed. And this first treatment was a little rough. I received my first dose of herceptin through IV. Granted it isn't the knock down drag out hard core chemo that some receive. But, it is still pretty hefty stuff. And of course, I got all the joys of some side effects that only happen to a small percentage.....like sweats, chills, fever, nausea, and other unmentionables. But the worst was the headache that lingered for a few days. I don't function well with a headache. They say the next dose should be better as the first dose is like triple strength. I go back for that in a few weeks.

In the meantime, I go in tomorrow for my oopherectomy and port placement. Oopherectomy is a big word for having my ovaries out. (got to stop that estrogen!)And the port placement will make my future IV treatments easier so they don't have to constantly be finding a vein to stick. Unfortunately, it will be just another constant reminder of the cancer I have. I considered not doing it. But the pros outway the cons here. It will just make some things easier. Who knows how many IV treatments I will need down the road.

That's about it. I have so much to say but my eyelids are heavy. I will just leave with this..... Isaiah 12:2 "Surely God is my salvation; I will trust and not be afraid. The Lord, the Lord, is my strength and my song; he has become my salvation."

Friday, March 30, 2012

You can't have a rainbow without rain......

You know the old adage "When it rains, it pours." Well, that is how I feel sometimes. Especially living in this soggy place we call the NW. But really I wouldn't have it any other way. You see, we get a lot of rain, as many of you know. But because of this rain, we get to live in a place that is green all year. We have the most beautiful days of summer. Our early fall days are so pleasant, you can almost see the leaves changing in October sunshine. And in spring, yes it is spring now, when we get a break from that rain, we see a rainbow as the sun shines brightly on the blooming flowers and trees. You know you have all seen this. You've smelled the fresh cut grass (and then sneezed) and then smiled. It is because of all this rain that we have really do have glorious seasons here in the NW. It is what makes living here so wonderful. I wouldn't want to be anywhere else.


When I was in high school I was part of a Catholic Youth Council. We met every few months in Seattle. We didn't see each other often but when we did we always started our meetings with a weather report. Well, just like outside, it has been raining in my life quite a bit lately too. And although, I thought it was pouring in February, the rain is coming down a bit more right now. I have had some partly cloudy days and some partly sunny days. (If you are from the NW, you know the difference). Today, partly cloudy and rain.


I will admit some days it gets really hard to wait for that break in the sky. We just want a little sun to shine down. It is very easy to get wrapped up in the solemn feeling that a gray, rainy day can bring. Sometimes, it is hard for me to not feel this way emotionally. I have had a few real rough days or moments because as you know our weather can change so quickly. Some days have been great. I have gone to work. Had a great day, but just come home tired and so emotional I just want to sleep...or cry. A few times it has been both. It is just so important for me to go on as usual to the best of my ability. I don't know sometimes if this is strength or denial. But it is living and that is what I want to do. 


This cancer has made me feel hope and feel helpless all at the same time. I am not always in control. This I found out pretty well recently. There is definitely some sunny patches in these gray days.  I still can't believe the number of people who are supporting me. I am in awe of the support page, the offers for help, the fundraising and everything else. I have truly appreciated everything. Especially words of encouragement. It is through all of this that God is reminding me that I am not alone. Proverbs 27:10 says "Better a neighbor nearby than a brother faraway." Well, I am lucky to have both. Neighbors near (and that includes Castle Rock) that I know will truly be there. And since many of you know I don't like surprises or asking for help, you did all this with out me. It is still hard to accept why and feel worthy of it all. I think because I have felt pretty normal so far. But after today I know that I will definitely need support. Because I can admit I have no idea what to expect form this cancer.


You see, I went to my oncologist today. I have been taking the tamoxifen for about a month now. The side effects haven't been too bad. Mostly hot flashes that come at the most inopportune times, like in line at Fred Meyer or at Evan's basketball game. But I had hopes that this drug would help shrink these tumors. Well, that appears to not be the case. I now have swollen nodes in my neck and the swollen nodes in my axilla (arm pit) and tumor in my breast are swollen to the point of it constantly aching. This estrogen in my body is fighting hard, enlarging not shrinking and apparently spreading to other lymph nodes. I knew there was a possibility of this. Things just haven't felt right. But I wanted to wait and get confirmation before any "freak out" commenced. 


So, I am ready to fight. Nick and I agree we need to be aggressive with treatment. My oncologist agrees too which is good. So, we are stepping things up a bit. Going forward with ovary removal, starting the IV therapy Herceptin next week. Changing drugs to one called Tykerb. Which is an aggressive drug for cancers like mine that over express HER2 (a growth factor with a big name that basically means my cancer promotes or encourages the growth of more cancer cells). And hopefully we will stop this estrogen from feeding these cancer cells and starve them. This drug will also come straight from the doctor as pharmacies don't carry it. 


Anyway, today I received a shot of Zoladex in my abdomen to begin shutting down my ovaries. The irony here is (and men stop reading if it is too much) is that I started my monthly yesterday. Yes, Aunt Flo is here for a visit. But hopefully (and here is the rainbow) this may be my last menses...ever! That will be weird, but I could do without it.  I had a chuckle with the nurse about this before she stuck me. At least I was numbed with lidocaine before the very sweet nurse Lena put the long needle in. Then I didn't feel anything. I sure wish lidocaine was always available for cramps. (She got quite a chuckle from this too). It was nice not to feel anything in my lower abdomen for awhile. But that didn't last long. 


ANYWAY,


What lies ahead? 


In the next month, I will have two more surgeries. One to remove my ovaries and one to place an IV port so they don't have to stick me every time. My IV therapy will consist of sitting in a chair for 2-3 hours having drugs pumped in my body every couple weeks and I will begin the new drug Tykerb. Then, if in 6-8 weeks when I have another scan, it better show these things shrinking. If not, we will discuss chemotherapy at that time. 


So things are still looking a bit cloudy but definitely some sun breaks and rainbows ahead. Just need to hope for the best and ride this out. Even Noah rode it out. All those rainy days and nights. But he saw his rainbow and I will too :)




"I have set My rainbow in the clouds." Genesis 9:13.

Wednesday, March 14, 2012

Attitude of Gratitude

As you may know, this last month has been a life changer for me. My emotions have truly been all over the place. Fear, sadness, anxiety...


But I have also felt love, warmth, thoughtfulness and immense gratitude. Here are some things I am grateful for.

  • My family- Obviously. From my husband, my kids, my brothers and sisters to cousins I haven't talked to in years. I am grateful for everyone of them. Nick has wrapped his arms around me (literally and figuratively) and just made me feel loved and I truly could not be without him. We have been together for 20 years. Married for 14 (15 in July). I wouldn't know life without him. My kids have been great through this. They all have handled it in different ways but since it is not as visible to them yet, I think they are taking it all in stride. Just normal days in the Underland house.
  • Facebook-  Yes I am grateful for Facebook. It has allowed me to be in touch with so many people. What a wonderful invention Facebook is. Sure it has its quirks, but what doesn't. And for all of you who have left me a message on FB, I will get to responding. (now I know what fan mail is..lol)
  • My network of people- And I have realized in the last month how big this network is. I have felt love and received messages from people from all stages of my life....childhood, highschool (oh wait those are the same).....college, young mom days, MOPS, softball, Seattle peeps, Vancouver peeps, PTA, church, and the list goes on. But none has been more prominent in my life this last month than my Castle Rock family. And not just my blood family. They (Kristi, Tessie, Barbie, Dianna, Pam, Lisa, Jenny...and many others) came together for me and have done some wonderful things that will help my family out tremendously through all this. I don't think I could ever say thank you enough. I had a hunch something was up. But never to the extent that they have taken their support. T-shirts, sweatshirts, walk/run, bank account. I had tears streaming down my face when I came upon the Facebook support page. It was very hard to accept and realize that this was all for me...FOR ME! But Kristi said it best when she said to me, "Ain't it great being from a small town." And yes it is! Castle Rock was/is a great place to grow up and the people there are my people.....Oh wait another song....."These are my people, this is where I come from, We're givin' this life everything we've got and then some......It ain't always pretty, but it's real. It's the way we were made, wouldn't have it any other way, THESE ARE MY PEOPLE!" (For the full version, look it up..Rodney Atkins..and yes it is country.)
  • A flexible work schedule (and the kids I work with)- I am grateful that I am a sub teacher. I have complained a bit because I really want my own classroom. But here is probably a reason now that I haven't gotten that yet. I am grateful that I haven't had to call in to work sick or find my own sub for all these appointments. I don't need to explain when I turn down a job. And when I have worked lately, it has been with my kindergarteners. The ones I love. They bring such joy to my life and I don't mind runny noses and tying shoes. I love that they get so excited when I come back to their class. 
  • Birthdays- Ally and I both had a birthday on March 10th. It was a weekend of fun. It started with the Lorax movie, a slumber party (for Ally), shopping with my sisters, dinner with my family and karaoke with my friends. I couldn't have asked for anything better. 
  • The power to say NO. I do not come by this one easily. But it is a given right for all humans to be able to say NO. I have taken a step back from some previous responsibilities (that I put on myself) and although I don't like to...I have said NO. I'm finally realizing that I can say NO and be ok with it. I don't have to do everything. 
  • Life- I am grateful for every day I have. I'm not trying to be sinister. It is just truth. The thought of death has crossed my mind. The fear is there. But right now I have life.
So, thank you to everyone and everything making my life a little better right now. Because with all the things going on in my head, it is nice to know that someone has my back when I feel like I just can't do it.  For this, I have an attitude of gratitude. (and FYI...that is a song sung by Jimmy Buffet on a kids CD called Thanks and Giving)

Friday, March 2, 2012

Stop...Look....Listen


I told you I like songs. And there is always one playing in my head. Today.....

"Going out of my mind these days, Like I'm walking 'round in a haze, I can't think straight. I can't concentrate."

Those are the words from a song by Diamond Rio. "Beautiful Mess."   Those words really sum up how I felt the last month. And the last 24 hours haven't been any different. 


Last night I was so much in a state of confusion. Nothing was going like I had planned. I didn't understand. I was lost. Fast forward 12 hours, a shaky night's sleep and a morning alone, I am ready to embrace this..I think.  I have stopped to think about this, looked (on the internet of course), took a call from one of my doctors and listened again to what they say.  I am beginning to understand this approach. And what a beautiful mess I am in.
It still sucks that I have this chronic disease called metastatic breast cancer, but the endocrine therapy approach is quite favoring.
  
Here are some things I found....


Endocrine therapies slow or halt tumor cell growth. Most endocrine therapies inhibit tumor growth by depriving the cell of estrogen or blocking its receptor.

Hormone therapy stops the effects or production of the female hormones estrogen and progesterone. Produced mainly in the ovaries, these hormones stimulate the growth of breast cancer. Medical oncologists may recommend hormone therapy to prevent breast cancer from growing, especially in my case since my cancer cells have receptors that attract estrogen and/or progesterone. 
This kind of sums it up...Why I am going with this therapy........
Trials comparing ovarian ablation (removal) with or without tamoxifen(Drug information on tamoxifen) to CMF-type chemotherapy (cyclophosphamide, methotrexate(Drug information on methotrexate)fluorouracil(Drug information on fluorouracil)) suggest that the endocrine therapy is equivalent to or better than just chemotherapy in women whose tumors express estrogen and/or progesterone(Drug information on progesterone) receptors. Endocrine therapy with ovarian ablation (removal), tamoxifen, or the combination is also useful in the metastatic setting in premenopausal women. (This is me in a nutshell)


Herceptin is an example of a monoclonal antibody used to treat breast cancer. The antibody is given to some breast cancer patients who produce an excessive amount of the HER-2/neu protein on their breast cancer cells.  (That is me) Herceptin works against HER-2 /neu on the surface of the breast cancer cells and prevents the breast cancer cells from growing and dividing.Herceptin can be given alone or in combination with chemotherapy. (Right now we are going it alone and will look at chemo later)


Well, I will bore you no more with scientific details. But, I am in a Beautiful Mess. Cancer is a mess. But I have the opportunity to try something that will stop the growth of these cells with minimum damage to my body. At least that is how I am feeling right now. I guarantee there will be more freak outs, confusion, and I will probably still be walking around in a haze for awhile. That, right now, is an understandable given.


So, I am going to finally go take a shower and then go fill my prescription. Because I need to get this show on the road and make sense of this Beautiful Mess and get myself on the road to recovery.

Thursday, March 1, 2012

Where do we go from here?

Where do we go from here????? That's a good question. Just one of the many I had going into my appointment today at OHSU. Where do we go? How do we get this stuff out of me? When will we start chemo? When will I have surgery? How long are we looking at? I had so many questions. I was going to ask all of these questions. We went in with a list. (Nick's list was much bigger than mine.) I had so many things I wanted answered. However, none of these questions were answered. Or at least not answered the way I thought or had prepared myself for. You see this cancer of mine is persnickety. It wants to do it's own thing. So, although I walked into that appointment confident that I would be leaving with a treatment plan to rid this from my body, we walked out heading in a completely different direction.

My cancer has spread. I knew this from the additional biopsies I had and my scar on my neck is my reminder.  Nonetheless, it is still breast cancer. But now we are calling it metastatic breast cancer, Stage 3b. Not quite stage 4. Stage 4 means it is in the lungs and brain. Mine, thankfully, is not. However, it is traveling in my body. And the cells they biopsied from my chest wall (outside the breast) were the same as the tumor in my breast. Whatever, blah blah blah. It is breast cancer.

So, Dr. How are we going to get this out of my body?

Well, unfortunately, we may not get it out of my body. But, we will treat it and hopefully kill it. But to do this, with my type and location of the cancer, we need to take a different approach.

 Endocrine therapy first. No breast surgery right now. No chemo right now. Take oral medications...tomoxifen at first.  Have IV therapy with a powerful drug called herceptin. And have my ovaries removed. We want to kill what is feeding this cancer....estrogen!

Huh? What was that? No surgery? You are not going to cut this cancer out of me and get rid of it?

Basic answer, not now. We could go in and cut the tumor out, and the lymph nodes closest to it. But the cancer has already spread and what is fueling it is estrogen and the source of these are my contaminated ovaries. So...we are going to suffocate the cancer cells by starving them. No more estrogen to feed off. And this estrogen is coming from my ovaries, so let's take those out. This of course will put me into early menopause...with all of it's wonderful side effects.

Look at it like this....your yard is full of dandelions. You could get rid of just one dandelion, but the seeds have already spread. Just cutting that one plant is not going to rid your yard of dandelions. And although they don't appear harmful, they really suck the life out of your lawn. You need to treat the whole lawn, to get rid of the dandelions and all the weeds. That's what we are looking at....treating the whole me.

Coming to this decision is very surreal. On one hand, I feel a little lucky that I won't be going through a major surgery or chemo right now with all the nasty side effects, like losing my hair. On the other hand, this isn't because I am lucky. If I could cut this stuff out, go through the chemo, lose my hair, have a rough year and have this be gone. I would. However, mine will be a slower process. I can't cut all the cancer out of me. And that makes me mad. I have to walk around with this cancer in me and have it die slowly as I starve it. I will still have many of the side effects like chemo. The one benefit.... I won't lose my hair. But I am still going to be tired, nasueous, etc. Only I may look like everything is going fine.

My doctor was very honest in telling me that I can get this to a place where I will lead a very normal, long life. But we need to get there. And the road is long. My cancer is a chronic disease. Much like diabetes. I have to treat it to keep symptoms at bay.

This is just so hard to fathom. How can you not just get rid of it? Everything I prepared for told me that the process goes surgery, chemo, radiation, remission. But now, I have a whole different approach to think about. This new approach means I have to trust that this will work. Trust that all will be fine. And it will....I hope.

I do need more than hope. I need some control. So, I am going to meet with a nutritionist. Meet with a naturopath doctor. And try to supplement my treatment with a whole body approach to wellness. I think this is why I like OHSU. They aren't just about western treatments. They are a Center for Health and Healing. They are willing to seek treatments that are conventional and alternative. I will take the medications and find other ways to treat myself as well.

This all relies on trust. Trust in the doctors. Trust in my strength. Trust in others. And just as I was realizing that this evening, I opened a package I got in the mail today. It was a new devotional titled "Jesus Calling." I turned to March 1 and here is what I read...

"When something in your life or thoughts makes you anxious, come to Me and talk about it. Bring Me your prayer and petition...... Though the lessons of trust that I send to you come wrapped in difficulties, the benefits far outweigh the cost. Well-developed trust will bring you many blessings, not the least of which is My Peace. I have promised to keep you in perfect Peace to the extent that you trust in ME."

Trust. I hope to get there. But right now, this is a whole new approach to fighting this cancer that I need to process and take to prayer. And I am just here....not all the way there....yet.



"Be anxious for nothing, but in everything by prayer and supplication, let your requests be made known to God" ~ Phillipians 4:6

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.