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.
I survived metastatic Breast Cancer. I was diagnosed February 6, 2012. Stage 4 and not knowing what could be done. From that day forward, my world became pink. And although pink is a color I liked, it suddenly became my new favorite color.
Friday, March 30, 2012
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.
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 4. It is not in the lungs, bones or brain. However, it is traveling in my body. And the cells they biopsied from my chest wall ( near the lungs but 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
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 4. It is not in the lungs, bones or brain. However, it is traveling in my body. And the cells they biopsied from my chest wall ( near the lungs but 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 4 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.
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 4 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
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
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.
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