So its NOT in the genes

I had my follow up appointment today with the genetic counselor to find out the results of my genetic testing.

It was good news for my family and I. I do not have either the BRCA 1 or BRCA 2 gene. At least not with the methodologies available at this time. They don't want to say 100% that I don't have it, but it is about 95% that my cancer is not genetically inherited.

This is good news for me in that I don't have to worry about inheriting ovarian cancer, and it also cuts my risk of reoccurence of breast cancer. On the other hand, because I'm "young" for cancer, my risk of reoccurence goes up simply because I statistically have more years left for cancer to come back.

I'm particularly pleased that this also means that my sister and daughter most likely do not have the gene, either. However, they do have a first degree relative with breast cancer (me), so their chances are higher than the average woman. If you don't know already, those chances are a whopping 1 in 8. So my sister and daughter should be getting a baseline mammogram 10 years before my diagnosis (age 30), and keep a sharp eye on it for life.

On another note, I have made it 27 hours now with NO narcotic pain meds. I still have that sunburn pain in my upper chest. But I realized the pain meds weren't making it totally go away. Were the downsides of being on the meds still worth it? I decided to see if I could go cold turkey make it 24 hours, and with God's help, I did. Eric has looked up the particular medication and said with its half-life, it is out of my system by now. So as long as I don't need to go back on it, I think I may be okay to drive. My range of motion is pretty good. I definitely wanted to be off those meds before chemo next week.

I also signed up to do a 5k walk in October to benefit the American Cancer Society. It's called "Making Strides Against Breast Cancer." I will be in my 3rd week of chemo, with 2 rounds under my belt. I hope I'm up to it physically. Just knowing that its on the calendar will give me a goal to reach.

As part of the walk, I've made the personal goal to raise $1,000 for the American Cancer Society. If you would like to support me in this cause, you can click here to make a donation in any amount. I figured that if everyone I knew or read my blog just donated $5, I would sail over my goal. Of course, you can donate in amounts higher. ;-) I want not only to help raise awareness and funds to help fight breast cancer, but also to give back to an organization that already has given me much.

My prayer requests:

• I need to make a final decision about whether or not to add the adriamycin to my chemo regimen. So wisdom and God's leading in this area would be helpful.
• That this sunburn pain in my upper chest and left arm would decrease and go away. It is worse in the late afternoon and evening.
• That I continue to regain mobility in my surgical areas.

Tears in a bottle

I woke up earlier than usual this morning. When I got up at 5 a.m. for what was supposed to be a potty break, I rubbed my left eye and ended up wrinkling my contact lens into the corner of my eye. I tried to go back to sleep and just ignore it until 6 a.m. When Eric got up at 5:30, I got up and fixed my contact and decided to use the extra time for prayer.

It had been several days since I had come before the Lord. I pray throughout the day as I'm doing my daily activities. Kind of a running talk with God. But I hadn't sat down before Him and focused on what I was saying. I'm such a bad kid. After all He has done for me, I can't set aside the time to simply talk to Him and read His word a few minutes?

I started off with thanking Him for allowing me to get through the night without pain meds. Yep, that's right. Last night I took Advil instead of the pain med. I thanked Him for getting me through the night and asked that He would get me through the day as well. I know He will. And then it happened. The floodgates opened. Tears began springing from my eyes and rolling down my cheeks. Not sad tears. I kind of think of them as holy spirit tears. It happens to me sometimes when I feel the Spirit close. It blew my mind because it happened almost immediately. I didn't have to "warm up" or anything. It was like God was sitting right there waiting for me to say Hi. And the second I did, He just showered me with love, comfort, peace and understanding.

The more I thought about how good He was to be waiting for me, the more the tears came. All I had to do was turn to Him and He was there. He is so faithful, and I am not. I'm so glad that God is not like me. If someone I loved blew me off, would I be there waiting at a moments notice to shower them with love? Or would I be aloof and make them do something to prove their love to me before I would give them the time of day?

It felt so good to just sit there and marinade in the Holy Spirit. Without words, just lifting all of my cares, concerns, worries to Him. Tears streaming down my face. Knowing that God takes account of every little thing about me...even the number of my tears. The tears that He collects into a bottle (Psalm 56:8). He knows everything about me. He protected me throughout my life, during some pretty stupid actions on my part to bring me to this place. He cares for me and will not leave me alone in this time.

I opened up my Bible at random. My eyes settled on Psalm 37. It was like a personal message delivered just to me. It's a pretty long Psalm, too long to put down in its entirety here. But I'll share some of the highlights. For me, the "enemy" and "evildoers" refers to is my cancer. Of course, it is Satan as well. Satan would love to use my cancer as a way for me to turn from the Lord, to curse His name.

1 Do not fret because of evildoers,

Nor be nevious of the workers of iniquity.

2 For they shall soon be cut down like the grass, (chemo is on the way)

And wither as the green herb.

3 Trust in the Lord, and do good;

Dwell inthe land, and feed on

His faithfulness.

4 Delight yourself also in the Lord,

And He shall give you the desires of your heart.

5 Commit your way to the Lord,

Trust also in Him,

And He shall bring it to pass.

6 He shall bring forth your

righteousness as the light,

And your justice as the noonday.

7 Rest in the Lord, and wait

patiently for Him;

Do not fret because of him who

prospers in his way (the cancer cells who may be prospering in my body right now)

Because of the man who brings

wicked schemes to pass.

8 Cease from anger, and forsake wrath;

Do not fret--it only causes harm.

9 For evildoers shall be cut off;

but those who wait on the Lord,

They shall inherit the earth.

10 For yet a little while and the

wicked shall be no more; (chemo will knock those cancer cells out)

Indeed, you will look carefully

for his place,

But it shall be no more.

11 But the meek shall inherit the hearth,

And shall delight themselves in the abundance of peace.

The Psalm is wonderful. It describes how the wicked cancer is doing its best to slay me, but how God will prevail and deliver me from them. It ends beautifully:

29 But the salvation of the righteous is from the Lord;

He is their strength in the time of trouble.

40 And the Lord shall help them

and deliver them;

He shall deliver them from the wicked,

And save them,

Because they trust in Him.

Amen! No matter what happens on this journey, God is my salvation. He knows the number of my days on this earth. He has me here fighting this fight for a purpose. May I be faithful to Him. I'll never be as faithful as He is to me. He is my strength, my shield, and my song. Cancer is hard. But I'm so grateful that He is with me to see me through it. I would be a complete and utter mess without Him in my life. This morning was another experiential moment at the feet of my faithful and loving Lord. I am blessed!

The cancer blogosphere

Don't you just love this logo? I've ordered a T-shirt with this on the front from a website I found today called Luna B Tee. I found it through the cancer blogosphere, which I discovered today. I guess I'm a part of it too.

Someone requested to be my friend on Facebook who said she followed my blog. I "friended" her and found her blog, Living With Cancer. From there, I just followed her links to find several other great blogs from women who have lived or are living with breast cancer. I was especially pleased to find a blog dedicated to exercise for breast cancer survivors, Fitness for Survivors. As I kept finding new blogs, I just wanted to stop time, forget about my plans for the day, my responsibilities, and just read. Digest new information. Learn from those who had gone before me down this path. I'm trying to figure out how to post the blogs of people who follow my blog on my page so others can find these blogs easily like I did. If anyone can give me a tip on

which gadget will do that for me, I'd greatly appreciate it.

Today has been a good one thus far. Mom and I took all 3 kids to Discovery Lake for some fitness time. She and I walked 5 laps and challenged the older 2 kids to bike 15 laps. Isabelle usually poops out after 2 or 3. She ended up doing 9 and Olivier did 10! We took them to lunch at the San Marcos Brewery to celebrate. Later today, we are going to take Olivier to do some school clothes shopping. I'd like to get that all taken care of before chemo, which starts in 10 days.

Eric asked to see my stitches last night. I showed him and he was very positive, saying that they looked good. Really? This looks good? He rattled off a list of how it could be worse: they could be red, pus filled, oozing, etc. Yeah, okay. If that is the metric, than it does look good. Heck, it looks fantastic! It looks like Frankenstein to me. But I am very thankful that I don't appear to be suffering from any complications from the surgery. I just get frustrated not to be able to do the things I used to do before surgery. I suppose I need to count my blessings rather than dwelling on what has been temporarily taken off the menu for awhile.

My prayer requests for today:

• Sounding like a broken record, but I still need physical healing. God is coming through on this one, but its a continual need. I know I've made pretty good progress since the surgery. I really would like to get off the pain meds. Which leads me to my second prayer need....
• Patience. Again. Another scratch in the record. I want to feel normal! I need to be patient with the time it is taking and not rush my recovery. I am very thankful for what I am able to do. To be able to go to the gym and do the stairmaster at a level that I wasn't able to do a year ago. Not 3 weeks post-op, I'm doing 30 minutes at level 10 and loving every killer minute of it. Again, I need to remember this when being impatient. My glass is not half empty, it is half full.
• Wisdom. I think we are pretty set on not doing the adriamycin. Is this a wise choice? It would be wonderful to get some kind of confirmation that it is. I know that it is all in God's hands. I want to be following His leads. Is this one?

Quick update

I'm finding it hard to carve out a time to blog now that my mother in law is gone. When she was here, I would do it in the morning while she was taking care of Jean-Marc. Today was particularly hard since it is Isabelle's birthday. Mom and I took her to see the Ramona and Beezus movie this afternoon while Jean-Marc is napping. Maybe his nap time will be a good blog time for me as well.

We went to the gym this morning and once again it had the pain relieving effect. So much so that this afternoon rather than taking a pain pill, I just took some Advil. So far today, I've only had 2 pills. Bedtime will make 3. Not bad. I do want to get off of them completely if possible before chemo on the 20th.

On the way to the movie, we stopped off at Kaiser so I could pick up my chemo medications. Not the actual chemo, but the meds that are supposed to help me handle the chemo. All I have to do now before chemo is get a blood draw on the day before.

The pain I've had is mostly that sunburn feeling. Even a hard shower hurts my upper chest above the incisions and my left arm. I think I read somewhere that is caused by nerve damage. I think it will fade with time, but I think there will just be some degree of it to live with. I had some strange pains about a half an hour ago along the incision area. If I didn't know better, it almost felt like pain in my left nipple. Except I don't have one of those anymore. Strange.

Today was better with regard to the potty thing. I told Eric that I just did not have it in me to deal with that right now. It's easier for me to change cloth diapers than deal with training. So he is trying. He got 2 pees in the potty. If he wants to tackle it, then he's welcome to try it. I won't stand in the way, but I'm not going to get emotionally invested like I did yesterday. Jean-Marc and I had some sweet moments today, so I'm feeling better about all that. It also helped for me to look at the calendar and realize that I'm pre-menstrual. Maybe for one of the last times in my life.

I'm doing my arm and chest stretches 2 times a day now. My right arm has about 95% of its range of motion back. The left is probably around 70%. As I stretch, it gets a little looser. Better and better each day.

Continued prayers for healing are much appreciated!

Beyond frustrated

My mother in law left this morning. We knew it would be difficult for Jean-Marc. It was, but not as bad as I had feared. It was worse for me. When we got him out of bed, he was asking for "Mamie." We just would say that she was going to be with Papie. ("Mamie" and "Papie" are the kids' names for Eric's parents). It wasn't too bad.

The problem is all with me. I have absolutely zero patience and tolerance for normal two year old right now. I tried today, I really did. But I'm still in pain. My mind is still consumed with cancer. I don't feel like myself physically or mentally.

Mamie loves to indulge the kids, as most grandparents do. When the kids are little like Jean-Marc, we find the first few days pretty rough. We just don't put up with the stuff they get used to. Like toys on the highchair tray. And Jean-Marc had 2 1/2 weeks of having an adult 100% committed to his pleasure his every waking moment. I just can't do it. I tried today, I really did.

Before I knew I had cancer, I had wanted to try potty training. But I know it takes so much commitement from the primary caregiver that I put it on the backburner. While my mother in law was here, she got him on the road to potty training. I didn't ask her to do it, but she was happy to get Jean-Marc going on the potty. She really felt like she was doing me a favor. He was doing great. With her. Not so much for me today. She would sit him on the potty, let him play with his bath toys and even let him play with water. I tried it today after breakfast. He immediately dumped a full cup of water all over my slippered foot. Ugh. We're done with the water. I still had to get ready for church myself, so I couldn't sit there all morning and coddle a poop out of him. Besides, he didn't really eat that large of a breakfast. I tried after lunch too. We stayed there for at least 15 minutes. I brought out every single bath toy. Nothing. Olivier helped me put him down for his nap. After the nap, he woke up, you guessed it....with a poopy diaper. Before dinner he asked for the potty and we went as fast as we could up the stairs with him climbing on his own (I can't carry him). But he had already wet. After dinner, the same thing happened, except this time it was poopy. I cleaned him up and started the bath. While it filled, I tried to get him to sit down and see if he could pee, but he just wanted in the water. Fine. Olivier came and put him in and we did the bath. After the bath, I tried to get him to sit down, but he ran into his room buck naked. Okay, fine. I figured if he had to pee, it probably happened in the tub. Before I could get his pajamas and diaper together, I look at him and he's peeing all over one of his favorite toys! Arrrgh! So frustrating.

I can't help but feel a little irritated for even finding myself on this potty training road. I did not ask for this yet! But here I am, and I feel like I have to keep trying. But I don't have the patience right now. I can't even pick my own kid up to bathe/dress/change him, and I'm supposed to follow through on potty training?

He deserves a better mom right now. I can't even give him the kind of hug I would like. I find myself almost resenting him at times, and that is just so wrong. The older kids are easier, they can entertain themselves. They can understand that I'm going through something hard right now and help out. Jean-Marc is barely two years old and he needs a mom that can take care of him and work with him. I wish I could be that mom right now. I'm frustrated at myself for my own inability. I'm frustrated at my body for still being in pain from surgery. I'm frustrated that as soon as I am going to feel better from surgery, I'm going to be going through chemotherapy and then I'll probably be feeling awful in a multitude of ways. What kind of mom will I be then??

My prayer requests:

• For patience. With everyone and everything. With myself. With my kids. With Eric. With my body. With God for not pulling me out of this pit faster.
• For my body to heal. I'm still in pain. It is tiring. I want to be able to stop taking narcotics, but the most I can go down to is 3 a day. Someone today said that the pain meds make you heal faster. I can take some comfort in that, I guess. But still...I want off of them.
• For Jean-Marc not to feel abandoned and ripped off. I can't help but feel like I'm doing that. Even when I'm physically there, I'm wishing that I wasn't. I'm wishing that I was doing something else, napping, blogging, reading. How awful is that? I love him to pieces, but just can't deal with his normal stuff. I guess this request relates back to the first one.

More thoughts on preparation

Eric got up in the night to take something for a headache. He deals with stress by getting physically ill. The lights he turned on while up made me come out of a deep sleep, although I didn't completely wake up. But it was enough to turn the brain on. Maybe that was a good thing, because I faintly remember a dream I had during the night where I found more lumps in my left axilla (armpit). In the dream, I was upset because I thought they had taken out all of the lymph nodes, and yet I was finding more lumps. Not fair!

Anyway, as I lay there in my semi-conscious state, I was thinking more about how God set the stage for this phase of my life. As many have reminded me, God knew this trial was coming in my life long before I did. It was no surprise to Him. "For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful,I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth,your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be." (Psalm 139:13-16)

He prepared us financially. Eric had about 2-3 years of serial unemployment. The right job just never came around. He'd work for a company for a few months, then they would restructure and cut the entire U.S. team. Or reorganize and eliminate his position. There was never the feeling of job security or financial stability. That changed in October 2008 when he began working for a French medicinal chemistry company, Prestwick Chemical. Despite these tough economic times, the company is doing well, and business is up. It helps us pay for my medical bills without worry. He likes the people he works with and for, and they like him. They even send a gorgeous bouquet of flowers to me a week ago. Nice!

He prepared us with our house and the things in it. We had been looking for a larger house off and on for many years. After Jean-Marc was born, we were pretty tight in our first house, so the search intensified. We moved into this house around Thanksgiving of 2009. Eric and I also finally got rid of the hammock-like mattress that we had been sleeping on for 11 years. We bought a Cal-King bed. It looked huge to us at first, and took some time to get used to the feel of it. I found out about my cancer right around the time I realized I was used to the feel of the new mattress. We are in a home were we all have space to escape to our own rooms, our own secret places, when we need to. I can rest in a comfortable bed when I'm tired. I imagine as I get into chemo I will appreciate that more and more.

I've already mentioned how He prepared me physically. By placing in my heart for the first time in my adult life the desire to get physically fit and lose weight. I don't need to dwell on that anymore. But I see as I work on rehabilitating myself from surgery, how being fit before the surgery not only helps me get over the surgery. But it also has helped me know the limits of my body and what it can do. My oncologist also said that the desire to exercise will help me during chemo as well.

He prepared me spiritually. I spent years just coming to church on Sunday, listening to the sermon, and going home until the next week. But a few years I really "plugged in." One Sunday when they were mentioning the need for help in the Children's Ministry, I felt the tug on my heart and stepped up. I spent 2 years teaching 1st and 2nd graders on Sunday mornings. During that time, I grew spiritually. Part of the curriculum I was teaching focused on Hebrew

feasts and traditions. Through that and my own study, I began to see how the Old Testament and those traditions and celebrations foretold the coming of Jesus in the New Testament. It really is true that if you draw near to God, He will draw near to you. (James 4:8) When I got pregnant with Jean-Marc, I had to take a break from the Children's Ministry. (Well, other than my own kids.) When the baby was about 6 months old, I began going to the women's daytime bible study. I met so many wonderful ladies, and our study in Isaiah was amazing. God revealed Himself during my private study time, but also through the fellowship and counsel of the women in the study. Last year, I had the opportunity to lead the women's bible study as we went through Kay Smith's book, "Pleasing God." Again, God taught me much about how He wants me to live and interact with others...even my enemies.

He has prepared me with family and friends. Not only do I have a wonderfully supportive biological family, but I have learned through this that I also have a family in Christ. I knew that on an intellectual level, of course. After all, I had gotten to know so many wonderful people through the Children's and Women's ministries. But when you see people coming to your aid through prayer, through fellowship, through meals, it is a light bulb moment. Duh! This is what the body of Christ is all about.

The meals have truly been a blessing to our family. We've had friends not only from church, but scouts and the kids' school bring dinners. My mother in law has been amazed at it all-it is quite a testimony to her. The meals serve the practical purpose of helping me get food on the table to the family. But they also bless me in a way that is hard to describe. We feel supported and cared for in a way that helps us support and care for each other better. Does that make sense? I want to thank everyone who has been a part of the meals. It is wonderful. If anyone wants to help with meals, we will gratefully accept it. You can check out it out at MealBaby and sign up for a day. We even had a friend across the country send us a gift card for a restaurant through that site. Nice!

I know there are other examples of how God has prepared my family and I for this. I need to start writing them down when they come to mind in the random moments of the day. There are so many ways, big and small. It makes me marvel at how God works. As I've said before, this is all to serve a higher purpose (or multiple purposes) of His. I don't know what they are, maybe I never will. But I do recognize and believe with all my heart that He will work all of this out for the good of us all. (Romans 8:28)

My prayer requests for today:

• As always, healing. I'm down to 3 painkillers a day. Sometimes 4. It depends on how much it hurts. I am on an upward healing path, and that is good. I need it to continue.
• That Isabelle's birthday celebration be blessed. She is such a sweet girl, and loves to decorate and celebrate everyone else's birthdays. I want hers to be special too. Before cancer, we were thinking about her having a slumber party this year. There's no way I'm up to that, so she's a little disappointed. Hopefully we can have a fun family day today for her.
• That Eric be able to manage his stress without getting sick or stressing everyone else out. That he be able to draw near to God in this time. I know that this is something that God wants us ALL to do-draw near to Him. It's harder for some people to do that.
• That we enjoy the last day of my mother in law's visit. I know Jean-Marc especially will miss her when she's gone tomorrow. I hope we can enjoy today without long faces.

Studies, support and girly stuff

I could either call this day 15, or C minus 14. Whatever. It's another day, and I think its going to be a good one.

Last night, I really focused on my arm stretches. I found a little American Cancer Society booklet with a few more. I'm not just doing the same ones every time, but mixing it up a bit. As long as I'm moving my arms in all directions, stretching the chest wall, I think I'll be in good shape. I was really encouraged last night as to how much I was able to do. I need to try and keep good posture throughout the day-it is so easy to hunch over. I suppose that goes for all of us, doesn't it?

As I expected, Eric came home yesterday and started researching adriamycin. He sent me a few links of some studies on it. I began reading them, but quickly began to feel panic rising in my gut. The bottom line of the study was good-outcomes for patients who left the adriamycin out were better than those who had it. Okay fine. What bothered me was how they described the patients. "Stage I, Stage II, or treatable stage III cancer," "node positive women," and the like were unsettling. It is scary to be in the most severe category in the study. I don't like to think of my life in terms of survival chances.

I've also come to the conclusion that reading cancer support group bulletin boards isn't a good thing for me. It's too bad, because in the past I've found such wonderful support from online support groups. When Olivier was an infant, I found Cleft-talk, a support group for parents with children with cleft lips or palates. Of course, ICAN was a big part of my life when preparing for my post-cesarean births. While I like the information I can glean from the breast cancer support boards, I am sometimes unsettled by other women's stories. Even their "stats." On paper, their stats are "better" than mine. Not all of them, but some. Their tumors were smaller. They were only a stage I or II. Little to no lymph node involvement. Mine feels like a mountain compared to theirs.

I know it could be worse. Heck, it can always be worse, right? At least I'm not a "triple negative." At least my PET scan came back clear and my cancer hasn't spread to my bones or other organs. (Although the chances of evil cancer cells floating around looking for a home is very high.) There are some women who are dealing with those issues as well. But its not a comfort.

I'm thinking a "live" support group will be what I need, rather than reading it online.

Enough of that. Let's get back to why today will be a good day. Mom and I are going to the gym, which always makes me feel better. I found out on Wednesday, that I can do the stair climber as long as I don't use my arms. Some people lean over the machine and rest their weight on their arms. First off, that's cheating! Other than that, I can't put the weight on my arms. So as long as I just climb, I'm good. It's killer, burns tons of calories and makes me sweat. Love it!

Today is also a day of preparations. Isabelle is turning 9 on the 9th. We are going to celebrate her birthday tomorrow, before my mother in law goes home. It works out perfectly because she is leaving early this afternoon for a slumber party for another friend, so we can decorate and surprise her when she gets home tomorrow. Mom is going to bring over her new ice cream maker and we will make home made rocky road ice cream. I get to bake a cake. Fun stuff.

I enjoy all of my kids' birthdays. I especially enjoy Isabelle's. It was such a triumph over adversity. My first homebirth, and my first vaginal birth after cesarean. It made me a stronger woman, and I need to remember those strong times right now as I go through another trial that will make me stronger too.

It is great having a daughter. I can't help but be a little sad that she now has a "family history of breast cancer." At least it makes her more aware of her risk. Bless her heart, I've seen her lift one arm in the air and feel around her armpit like she is doing a breast self exam. I'll find out next week the results of the BRCA genetic tests to see if I carry one of the two known breast cancer genes. Those results will impact her as well. We are looking forward to school clothes shopping-something I'd like to do before my first chemo on the 20th. She got a coupon in the mail from her favorite store, Justice. She's saved it for our special "girls shopping day." I'm hoping that mom, Isabelle and I can hit the mall and engage in some fun shopping therapy and a girls lunch.

My prayer requests today are the same as yesterdays. Thank you so much for your prayers and support! I am blessed by you all!