Horcruxes and Candy

Halloween happened again this year. With everything going on, we still managed most of the Halloween essentials. 

The kids carved pumpkins of their own creation. Emily carved hers herself

and Jane drew a face on hers for us to carve. 

I cannot express how much I prefer this to the super intricate templates. And the kids have way more fun this way. We were watching Charlie Brown approximately 30 minutes after the first slice into the pumpkins. 

Emily was Hermione Granger this year. She is obsessed with Harry Potter. Ever since we finished reading the 7th book, there has been a bit of a void in her life. 

Jane went as Cinderella 2015. Not the old Cinderella. She made sure we were clear on this. 

Here they are, ready to trick or treat. When you go as Hermione, you get a nice warm robe. When you are Cinderella, you have to wear your coat under your princess dress. That's just the way it is. 

They stayed out for about two and a half hours and collected their own weight in candy. Emily was mistaken for Harry Potter multiple times. I was mistaken for a pirate once. It was a pretty successful evening. We have one of those neighborhoods where the streets are swarming with kids on Halloween night. Chris decided we should keep track of how many kids we got at our door and it was just over 200. I love being part of such a fun community.

On the chemo front, I have started a new drug. It is called Taxol and while I hate it, it is much less punishing than A/C. I am still out of commission most of the day on Saturdays, and I'm exhausted all the other days of the week, but I'm not sick to my stomach anymore. I am starting to hope that there is an end to the misery. Just 10 more weekly treatments and my chemo should be done. 10 weeks feels like forever sometimes. Although I do have plenty to distract me: Thanksgiving, Jane's birthday and then Christmas. I hope it flies by.

Somebody Turn Down the AC, Please

I guess I should post an update, although I hate writing about myself and I hate writing about my treatments. But my friends and family are wondering how I am doing, so I thought I'd post a little something.

Thursday is my last treatment of a drug abbreviated AC. No one cares what it stands for so I won't go into it. After that I will start on Taxol. 12 treatments of that and I should be done with chemo sometime in the new year.

A lot of people ask me how I feel. I'm not sure how they want me to answer that question. Do they want me to say "okay" so they can move on with their lives or do they really want to know? Because the truth is that I feel terrible. I feel like I'll never be myself again. I feel like I will never be done being sick. Every day that I am creeping closer to another treatment and still taking nausea medication is a healthy day that is pulled out from underneath me. This cycle I was never able to go off of the medication. I have to go to my next treatment without having any "good" days.

I got two separate G.I. infections that my body should have been able to fend off. One from food, one from who knows where. But my body can't fend them off. Because I don't have enough white blood cells. I feel weak and tired.

But I think the worst part of the chemo is the busyness. I am still working full time. I am still a mom. I am still a primary president. Every moment that I can move is filled with constant activity and I feel a need to streamline everything that I do, trimming anything that isn't absolutely necessary because my time and energy are cut in half. This is why you aren't supposed to get breast cancer at 36. There simply isn't enough time for it.

Chris is doing so much to take all he can off my plate. He is doing laundry and dishes, driving to activities and helping with science fair projects. I am more grateful for him than I can articulate.

My counselors have been my angels, taking over when I am sick and helping to shoulder the load of the primary program.

People also ask me what they can do. Honestly, I need to be allowed to disappear when I feel terrible and I need slack when I don't. I need to not have anything unnecessary added to my list of things to do. I need you to treat me like I'm normal and talk to me like we talked before I got sick. In my mind I am still a youngish mom with long brown hair, a wicked sense of humor, and a fit body. Please don't point out to me that I'm not those things anymore. Don't dwell on the fact that I'm wearing a scarf. Don't try to fix me. I can't wear a wig, and frankly, I don't want to. I can't eat my favorite foods and I may not even be able to eat what I could yesterday. I am going to be sick for awhile. That's just the way it is. I need friends who will accept me for who I am and not constantly trying to make me better. Because I won't be, not for awhile at least. I am grateful for the people that love me. For my friends and family, and especially for Chris, who wholeheartedly accepts me, sickness and all.

I am hoping that when I switch drugs that things will be better and chances are that they will be. But for now I am smack dab in the middle of suck.

I won't share any pictures of myself yet. Because they don't match who I am. Instead, I'll share an image of the thing that comes closest to chemo. You know when Dumbledore and Harry are in the cave looking for the locket horcrux? Well, Dumbledore has to drink the poison in the basin so they can get the locket at the bottom. Harry keeps feeding it to him, even though it appears to be killing him. That's what chemo is like. I hate it.

Schoolin

Somehow school started this past week. Jane is in 1st grade this year and Emily is in 4th. 

They pick out their own clothes now, so they were both super excited to wear outfits of their choice. Jane spent the entire evening before cracking up about her shirt which reads, "My unicorn ate my homework". Clearly clothing manufacturers are able to tap in to a 6-year old sense of humor. Bravo, Children's Place. I would have never found such a statement even mildly amusing. Personally, I wanted my kids to purchase a shirt featuring the "Dark Side of the Moon" album cover. Not cool, mom, not cool. 

Here they are, marching to school, Emily clutching her permission slip and check that will buy her a year's worth of playing violin in the orchestra. She wants to grow up to be like Lindsey Stirling. I'm not sure which girl trend scares me worse: the violin frenzy created by Lindsey Stirling or the bow and arrow obsession created by Katniss Everdeen. At least if you emulate Katniss you can put a little food on the table. In the meantime, we have a basement bedroom that will double as a music room. I think that will provide safe distance. And if this blog is being read by adult Emily as she tours as a professional musician: I knew you could do it, sweetie! When no one else believed in you, I did!

Emily scooted right off to her classroom without a backwards glance, but Jane still wanted us to walk her in and say goodbye. Her teacher is brand new this year and very enthusiastic, but still seems to not be able to be fooled by Jane's shenanigans. I think it will be a good match. 

All week they have been making new friends, reconnecting with old ones and working hard in school. It should be a great year. 

Birthday, farm and Chemo casserole

This past week was Chris' birthday. I feel like he deserves a trip to some exotic location and a million dollars after all he's been through with me this summer but he had to settle for a new pair of hiking boots, 

Some homemade cinnamon rolls (my first post surgery baking foray) and a workout video - to go with the cinnamon rolls, of course. 

Ami and Jacob had just returned from the pacific northeast and returned with a bigfoot shirt for Chris. Everyone who knows Chris knows that he has a strange bigfoot obsession, so he was very pleased. 

The kids' summer camp ended last week and school doesn't start until Tuesday. Chris and I were supposed to take turns taking off work in order to fill the gap. But considering the state of my work leave after this summer, Chris agreed to take the whole week. He has been taking them on adventures which have included swimming, shopping, going to the library and going to a farm. They have enjoyed it thoroughly. 

They also went to go see the progress on the new temple. It is beautiful. I can't even express how grateful I am to Chris for everything he does. He has picked up the slack so seamlessly that I think the kids have hardly noticed the difference. 

Our biggest and suckiest adventure this week was the beginning of chemo. This is adriamycin. It is nicknamed "The Red Devil". I tend to agree with that assessment, especially since it feels like there have been demons in my stomach for the last three days. 

Two hours after treatment, I was white as a ghost and sicker than a a 12 year old Drew Barrymore at a frat party. That was in poor taste. I'm allowed. I'm not a well woman.  

Everyone means well and everyone has their own advice on how to get through chemo. I think the only way to get through is by making your own path and trying to keep things as normal as possible. I do what I can, when I can. When I can't cope I take Ativan (which has amazing anti-nausea properties) and I go to sleep. I eat bland food and stay away from anything spicy, bitter or sour... or anything that smells like anything resembling food. That's right out.

During chemo, I enjoy the blanket my grandma made for me and the excellent wifi at the cancer center... and my rock. Chris is always there, getting me whatever food I want for my last meal and telling me that I'm normal for wanting to cry. I really don't know what I would do without him.

Two months of the Red Devil and his little sister, Cytoxan and then I will be onto three months of a different (hopefully less stomach churning) drug. After that, life. That's the whole reason I'm going through all this crap. So I can get on with life.

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.