As they walked and walked and walked and waaaaalked

I am mostly on the mend and I thought I would update.

I went back to work about a week and a half ago. I wasn't fully healed, but I was starting to feel useless at home and I thought it would be good for my spirits to go back to work. My boss was less than pleased that I wasn't at full capacity, so in the end it didn't help my spirits as much as I hoped, but at least it kept me from using vacation leave. And it did feel good to be somewhat normal.

I had another small surgery this past week. Some of the skin around my incisions had died and it had to be cut away and the incisions restitched. This was very depressing to me because it set my healing back by two weeks. It also set my ability to shower back by two weeks. Going into this whole process, I somehow had the impression that I would be able to shower a week after surgery. A month later, here I am, an expert at shaving my armpits at the bathroom sink. Everybody needs a skill. This is mine. 

My little surgery also set chemo back. I will start that on August 20th. I am having a hard time wrapping my mind around that. I would rather do just about anything than chemo right now. Anything but die. So I guess chemo it is. 

Yesterday was Race for the Cure. It was a hard day for me because even though I can't lift a full gallon of milk or open a heavy door or scoop ice cream, my legs are totally unaffected. I want to run. I know it would hurt like crazy if I did run and maybe rip out some of my fresh stitches in the bargain. So it was great that I had a big group of friends and family who came to the race with me and reminded me that it was okay to walk. 

Some of them even walked with me, so I didn't feel like crap at the back of the pack. This group contains some very able runners and gifted athletes. I think both of Shelly's daughters would have actually lapped me if we were all running a 5k. But they walked with me. 

Chris walked with me too. He said he would have placed in the top 3 of his age group if he ran in the same time as last year, but he walked with me. He has been amazing and supportive through this whole thing. He's the only one that sees the whole story and he's okay with it. I love him more than I can ever express.

One of my coworkers who has been through breast cancer warned me that going to RFTC is difficult because there are all these people telling you what you can do to prevent cancer, when you know there was nothing you could have done. I dismissed her warning. But by the end of the race, I was livid, having spent most of the race behind breastfeeding proponents (none of whom were survivors) sporting pink tutus and shirts that grossly exaggerated the preventative effects of breastfeeding upon cancer... one more thing to make women feel guilty for not breastfeeding. The reason why I was upset is because my oncologist says that the mastitis I suffered while breastfeeding far and away cancelled the tiny benefit and actually put me more at risk for breast cancer. I am happy that I breastfed my kids, but because it was best for them, not because it was best for me. Because clearly it wasn't.

So I walked away from the race frustrated. Frustrated that I couldn't run. Frustrated that I had done everything right and still got cancer. Frustrated that after decades of these fundraising efforts that the only way to get rid of cancer is the same way they got rid of it 50 years ago: cut and poison. I've been cut and I'm preparing to be poisoned. I really hope that the next 20 years bring some serious changes because I don't want my kids to go through the same thing.

I also walked away grateful for the support and hopeful that next year I will run and leave the breastfeeding ladies in the dust.

In other news, school starts in 2 weeks. This summer life has gone on. Jane has finally learned to swim 10 feet unassisted. Emily has taken up running. She says she wants to do track next spring. she has her daddy's legs so I think she will be quite successful. She also says she wants to learn how to play violin. Heaven help us. This could be a long school year.

The Surgery

I had chemo education today. It was bleak. So I thought that I would say to heck with my stupid arm pain and blog about my surgery before I forget how well things really went.

Leading up to surgery, the news went from bad to worse. My tumor was aggressive. Top of the charts aggressive. And it was triple negative, which means that it has no hormone receptors and that chemo is the only treatment option. Four days before surgery my chemo regimen was set. 5 months of harsh treatments whether or not the cancer had spread. I had no hope of avoiding chemo. I still don't. It will happen, in a couple weeks whether I want it to or not, so I need to remember that it hasn't all been bad news.

The Saturday before my surgery I went for one last run and then took a hike with my family. 7.5 miles into what we thought would be a 5 mile hike, the whining was at an all time high.

Nonetheless, it was a great last hurrah of health. 

The following day I got a blessing from Chris. He promised me that I would get to raise the kids. That is, after all, the thing I really wanted out of this. 

The next day I went into surgery. Prep was so incredibly unpleasant. It took 4 people and innumerable pokes to set my IV. But mainly I was scared to death that the surgery would reveal cancer in my lymph nodes. As they wheeled me out of prep, they gave me something amazing in my IV. I didn't catch the name, but it started with a V. If I ever become a junkie, it will be on that stuff. I no longer cared that I had cancer. 

This is where Chris' story differs from mine. For him, it was 9 hours of waiting and worrying. For me, it was 5 minutes. Either way, I woke up very late that night. The first thing I heard was a conversation between a doctor and a nurse. He said, "The nodes were negative?". The answer, "Yeah, negative". I hoped beyond all hope they were talking about me and not some other cancer patient that was waking up at 11:00 at night. The nurse at my side was going on and on about how I needed an oxygen mask and how I shouldn't try to sit up. I didn't care for any of it.

"Were my nodes negative?" I demanded. 

She went to check. 

"There was no cancer in your nodes"

Chris had known for 6 hours and had been waiting to give me that news. Poor guy to have his Christmas morning surprise spoiled by a couple of talkative medical professionals. 

Now, let's pause for a minute on this amazing news. I am 36 years old. I don't get mammograms. I don't have a significant family history of cancer. I don't do self exams. I was not looking for cancer, neither was my doctor. Yet, I just caught a super aggressive, fast growing cancer in Stage I, when it is most curable. 

The next day I found out that my other breast also had precancerous cells. For me, a lumpectomy would most likely have meant a second surgery and may have possibly taken my life. But now my breasts are gone and I never have to worry about being diagnosed with breast cancer again. 

This is what that looks like:

The next few days passed in a haze of pain. I never realized how much I use my chest muscles until they had expanders shoved underneath them. In the 9 hours during surgery, the nerves that run down my arms had been severely irritated and I had a tiny spot of one lung collapse. I was in rough shape. I also had to carry these drains around with me wherever I went.

I spent 3 nights in the hospital and then came home where Chris has been taking care of me ever since. He has been amazing. He has done everything for me this week. He held my hand on Monday when they took out my drains. He has helped me stand up countless times. He has picked up my medicines and supplied me with food and water. He even figured out how to wash my hair without getting my dressings wet. That alone deserves my undying love. 

My mom has been taking great care of the kids. They have been even happier than they would have been at home. 

So basically, I'm on the mend, I'm doing well and (because so many people have asked) my implants are set to starter size. That's not where I will end up. And now I'd better sign off because my entire upper body is screaming since I made it type so long. Maybe in another month I'll be ready to blog again. By then I will be deep in the throes of chemo. But until then, things are getting better every day. 

And... another date.

The happy thoughts I've been sending the way of the plastic surgeon's scheduler must have worked! My surgery has been moved up to the 13th. No, I'm not superstitious. Except for when it comes to that urban myth about leaving cancer in your body and death.

A Date

So.... after a long wait I finally have a surgery date. It will be the 22nd of July. Three weeks from tomorrow. It will be followed by 2-4 days in the hospital and then a long road back to awesome. And hopefully freedom from cancer.

Here's why it took so long. (The spirit of these conversations are true, but some of the language is made up)

Call #1 to plastic surgeon's office:

Me: I haven't heard from you for a few days. Do you need anything from me?

Office Staff (OS): No, we are submitting to insurance. We'll let you know when we have a date.

Call #2 to plastic surgeon's office:

Me: So you told me several days ago you were submitting to insurance. My husband called the insurance and they don't have anything.

OS: That's someone else's job. She didn't come in today. 

Me: Someone needs to get this resolved. I'm not going in for a tummy tuck. This is cancer. I need this surgery to happen as soon as possible. 

OS: We'll let you know.

Call back from plastic surgeon's office:

OS: The doctor has been on trauma call all week. I would have submitted to insurance, but I needed a code. And I couldn't ask him for a code because I haven't seen him all week. I finally, just now, miraculously, after you harassing me, located him so that I could get the code. 

Me: Well, I hope you have everything you need now because I'm really anxious to get this surgery. 

OS: You have to understand I couldn't do anything- not submit to insurance, not put you on the schedule -  until I had this code. This code is like the one ring. Without it I am powerless, but with it I can rule all manner of creatures and schedules. 

Me: (silently) You are a lazy, lazy woman. I can't believe you have a job.

Me:(out loud) Well, let me know if you need anything else. 


So, July 22nd it will be.

Today my coworkers all wore pink and brought pink food. It was really nice to see their support. I need it, especially considering that they will be the ones picking up the slack when I'm lying flat on my back watching "Parenthood" from the very beginning.

Eat, Pray, Love, Protest

So lots of people have been asking lately if I have any news. No I do not. I saw the plastic surgeon this week and while I am a great candidate for surgery etc, etc, I still need the blessing of the insurance company. So my case is now caught up in insurance and no one will schedule until I've been authorized (which I will be but it may take time). If that doesn't happen this week, I have a game plan. You know all those same sex marriage advocates? I figure they are probably getting bored and miss the lobbying/advocacy/protesting scene. Well, I'm going to round some of them up and head down to the insurance office. We may not have time to change the protest signs, so I may end up accidentally married to a woman by the end of the week, but at least I will have force behind me.

In the meantime, since Chris and I had to miss our vacation, my parents were kind enough to watch the kids so we could have a weekend in Denver. We had our own version of eat, pray, love.

Eat. (we ate A LOT this weekend)

Pray.

Love. (We all know Chris' first love is the theater. Actually this was the first production of anything he's seen. It was fun)

Then my fabulous friends put together a girls' night for me. It was great. I tried to get a picture of everyone, but I missed half the room because I got distracted and because my new phone is weird. There were 20+ friends there to support me. My sister came from Denver and a couple of great friends came up from Northern Colorado. It was amazing. One of the best parts is that Phyllis, one of the matriarchs of our girls group whom I have admired and loved for years came. She is a few weeks recovered from her double mastectomy performed by the same surgeon who will perform mine. That was an enormous comfort to me. 

These ladies let me laugh all night long and they brought me freezer meals so that I didn't have to cook while I was recovering which will be a great relief to me since the grilled cheese sandwiches I made for dinner tonight nearly wiped me out. My only concern is that my family will get used to this quality of meal. Hopefully they will be so happy I am recovered that they won't mind going back to chicken nuggets for dinner. 

Monica, you are an angel for putting this together. I'll love you til the day I die. So much that you could possibly be the woman I accidentally end up marrying by the end of the week. My apologies in advance.

And then, because I wanted to and because it made me happy, we went to see the fields of wildflowers that have sprung up east of town. 

So that was my week this week. Lots of love, lots of support and still no surgery scheduled. I'll keep you posted.

Cancer: a Story of General Loathing

I am putting this on my blog because I am exhausted. I have had the same conversation about 20 times over the last few days and I can't do it anymore. More importantly, I can't comfort the people I tell because I am so scared and upset myself. So, if I haven't called you or told you personally, it's not because I don't love you, it's because I am just plain exhausted. I am still a mom. I still have a full time job. I am tired even before having hours of sickening conversations every day.

I have breast cancer.

I'll put what I know on here and I'll try to post updates. So here goes:

I found it about two weeks ago. I was getting dressed for a workout and my hand brushed up against it. Seconds or minutes later (I don't know which), I woke up on the floor. I had passed out cold. At the time it seemed like an overreaction, but knowing what I know now it was completely appropriate.

I went to my doctor, she gave me a bit of false hope and a measure of concern. I begged for a same day appointment to get a mammogram, but there was nothing available. The next day I had to leave to go to Pittsburgh for work. For a week I waited and tried to distract myself. Fortunately, I got to travel with a coworker who became a friend over the course of the week. That helped a lot.

When I got back, I got a mammogram, then an ultrasound, then a biopsy. Then a phone call letting me know I have cancer. Yesterday I visited the surgeon. I immediately felt she was the right choice. I thought I would have to beg her for a double mastectomy. Instead, she spent half an hour trying to build her case for it until I cut her off. I told her that I needed to live more than I need breasts. I don't have any lifestyle risk factors, so the only risk I can eliminate is my breasts.

And then, heartbreakingly, Chris and I cancelled our biennial couple trip. We were supposed to leave tomorrow for the Florida keys, but I can't delay treatment another week. I'm already going insane. That has been one of the hardest parts of this process. Our marriage is built on these trips that happen every other year and we could really use the extra strength now.

So here's what I know so far:

• I have Invasive Ductal Carcinoma. It seems to be a little over a centimeter (which is larger than originally thought) and most likely involves some tissue around the duct. It is grade 3, which is the most aggressive and also the most common among young cancer patients. But it is small and that seems to indicate that it will be treatable. I won't know if there is lymph node involvement until after the surgery. If there is no involvement, my cancer will officially be Stage 1, if there is, it will be Stage 2 or higher. 
• I can't schedule a surgery yet because the plastic surgeon wants to see me before he will schedule. This is incredibly frustrating to me. I know it won't kill me to wait a week or two more, but I want it out now. My reconstruction will take place at the same time as the mastectomy, so both surgeons will have to coordinate. 
• I am having a double mastectomy because not doing so would be stupid and risky. Mammograms are ineffective on women under 50, and especially on someone like me. I have very dense tissue and very little fat, making a mammogram about as effective as a picture with someone's thumb over the lens. Combine that with the fact that I am 36, already have cancer and will have in increased risk for the rest of my life and I believe that anything other than a double mastectomy would be irresponsible. I have two kids that I really want to raise. I already nursed them, so there's no need to hang onto these cancer incubators. There will be a lot of pain involved, but it will be worth it. Yes, a lumpectomy may be effective when it comes to 5 year survival rates, but I want to survive a lot longer than 5 years. 
• Even if there is no lymph node involvement, I will need chemo. Again, this is because I am a 36 year old with cancer. Something has gone horribly wrong, the cancer is aggressive and I can't be treated like the typical 55 year old breast cancer patient. My surgeon explained it that most cancer patients need to live 20-30 more years. She wants to make sure I live 50 more years. 

People have asked if I need anything. Mainly I just need to know people support me. I can't be the one to comfort people right now (one coworker actually told me that if he found out he had cancer he would kill himself). My world has been turned upside down and I need to know that my friends and family love me and are praying for me. Also, if it seems like I've forgotten about my cancer for five minutes, let me forget. I will bring it up if I want to talk about it, I promise. 

Depending on scheduling, I may need people to help with childcare. My kids just watched their grandma die of cancer and they are terrified. I really honestly believe I will recover from this, but they are still worried. I want to make sure there is someone that they love and trust watching them while I go to appointments and what not. Also, I need someone to teach me how to pencil on eyebrows and apply fake eyelashes. The prospect of losing my hair is nothing compared to that of having a naked eyebrow area. It actually kind of terrifies me. For real. Please contact me if you have this skill.

I'm not quite sure yet what I need as a brand new primary president newly diagnosed with cancer. That one is harder. I am going to try to continue to serve, but I'm not going to dump it all on my counselors either. 

So far, it seems as though I caught this very early. I have to believe that God helped me find it. And I also have to believe that if He helped me find it, I have to believe that He also wants me to be cured. I will post any updates here so I can spend my energy on my family. So there it is. You know everything I know. I'll post an update when I have a surgery date. In the meantime, I love and appreciate all of you. Thank you for all your support, offers of help and prayers. 

Mama's Got a Big Back Porch and Other Tales

This last couple weeks has been pretty crazy. 

It all started with Emily's being awarded the "Super Sabercat" award. It means she lives by the Sabercat laws. 

She was also awarded a Million Word Reader prize, which consisted of a skip day at a place called "Fort Fun". (P.S. Each Harry Potter book has around 200,000 words. I now know this information.)

Jane graduated Kindergarten. She says when she grows up she wants to be a dance teacher. 

Then they had their last day of school, a grueling hour and a half. (notice the new sidewalk they are standing on - more on that later).

The last day turned out to be rainy, giving us plenty of time to spend at the library. 

That night we went to go see the girls' new cousin, Mila. She is Chris' brother's daughter and she is beautiful. She has the longest limbs I have ever seen on a baby. She clearly is related to me by marriage only. (Again, I apologize for the hobbit legs that you may or may not inherit from me, Emily and Jane)

They loved their new cousin. By all accounts, she will probably complete the cousin lineup, so the girls are drinking her in. 

Jane needs a lesson in personal space. One which Mila is happy to give her.

Chris is fondly remembering his days as a new dad. The memories of the sleepless nights get fuzzier as you get older. 

And lastly, we have a new big back porch. The contractors have been here for 2 weeks while the scope of the project gradually creeped away from us. First it was just the porch, then it was a pad in the side yard, then it was the cracked sidewalk out front. Our neighbors are properly annoyed, and so am I. You can see we haven't done anything with the new big back porch yet (save putting a tacky blue bucket on it and letting Emily park her hammock there). We have plans for a pergola, but right now, we are tired and broke. Concrete is expensive. 

As a postscript, I am now the primary president in our ward. I am so out of my league here. Our primary is enormous, over 100 children if you count nursery, which I do. Heaven help them. Heaven help me. But I have some great counselors and a very understanding husband. Alone I'm a lost cause but together we have a shot.