Chemo: The End

So I finished chemo on New Year's Eve. At the time I didn't know I had finished. I thought I had one left. But one of the side effects of the drug I was on is neuropathy. Last Sunday it was a struggle to get myself dressed, let alone do my girls' hair because my fingers were so numb.

My doctor said it was too risky for me to have my last treatment. She said I could loose feeling in my fingers permanently. Right now they are just numb at the tips and I have a good chance of getting full feeling back. She decided it was time to cut my losses and skip the last treatment.

The nurses gathered together and wished me well. They gave me a bottle of sparkling cider and told me to go celebrate. It was bittersweet to tell them goodbye. They've been a big part of my life.

We celebrated at Starbucks with the cookie and mint tea that Chris usually delivers to me during my treatment. 

I had very mixed feelings ending chemo. On the one hand, I was glad to be done. On the other hand, I hated not finishing. Being done with chemo feels weird. I have been fighting for 7 months. The fight is over now. I am afraid to end the fight. I've never been one to sit tight and hope that nothing bad happens. That's precisely what I have to do now. There is a lot of fear associated with ending treatment.

There is also a lot of relief. Today was the first Saturday in months I was able to participate in life. I am still exhausted, but I'm not crashed like I normally am. It will be a long time before I am back to normal, whatever that is, but at least I'm on the up side of things now.

When I started Taxol, which comprised my last 12 treatments (or I guess it was only 11 with the skipped one), I started a countdown on the wall of my cubicle. I took a selfie every week as I took down a number... at least after the first one. Anyway, here's my countdown. I got a little sicker every week. Now I get to do that process in reverse.

It's hard to look at those pictures. And not just because I suck at taking selfies. I don't want to remember how sick I was, and still am. But I need to remember because I need to appreciate health when it returns. 

I've been getting a lot of questions about what comes next. I can't have hormonal therapies (tamoxofin or herceptin) because my cancer was triple negative. I won't have scans unless my doctor feels the need to investigate something. I will get blood tests every few months to monitor tumor markers and liver and kidney health. I also will have a surgery in a couple months to finalize my reconstruction. 

I am told that my immune system will be back in a couple of weeks. I am told that my anemia will be gone in a couple of months. I am told that my hair will be long enough in 6 months that I won't even look like a cancer patient anymore. I am told the fear gets less as time goes on, but it never goes away. 

My oncologist says my job is to life my life now. It won't be easy, but I am going to try. 

Christmas 2015

Last Christmas Jane had the flu. Her fever got so high she was delirious. We kept saying that next Christmas would be better. Well, it rolled around and here I was... at the end of chemo. I'm not going to speculate about next Christmas. But all in all this Christmas wasn't bad.

I had treatment on Christmas eve, so I crashed on Christmas day, but there we managed to have a decent Christmas after all. 

We had Christmas eve pajamas

and Daddy reading the Christmas story from the bible

and going to see lights

Just looking at this house makes me tired, thinking of all the work that went into it. 

The loot had been prepared well in advance, so we just had to schlep it up from the basement.

And then the wonder of Christmas morning happened.

I even managed to make our traditional cinnamon rolls for breakfast. 

The kids got Kindle Fires. I have been holding out for a very long time on tablets for the kids. Chris convinced me that the Fires could be locked down sufficiently to be safe for the kids. We also locked them down so that they are primarily used for reading. You'll thank us someday, kids. When your classmate's brains are rotted from too many games and movies on their tablets. You're welcome. 

Fifteen

Today is my fifteenth anniversary. A decade and a half ago, we were two college kids that made promises that we may not have understood fully at the time, but which we were determined to keep. We have seen a lot through the years. As much as this year has sucked, we've been through worse and we will continue to go through this together.

I wanted to take some time to thank Chris for all he's been through with me for the last year. The day I found my cancer, he accompanied me to the doctor's office because he knew I was scared. The next week he held my hand as they did the biopsy. He was there at the surgeon's office as I cried when I was told a mastectomy was my best option. He wept with me that day as I learned I would have to have chemotherapy. He called and nagged the surgeon's offices when I was having a hard time getting a surgery date set. He gave me a blessing the night before surgery that everything would be okay. He waited for 9 hours during my surgery, never leaving the hospital just in case something happened. He rejoiced with me when we got the news my nodes were clear. He took care of me for 2 weeks following surgery, even after he caught pneumonia. He washed my hair when I couldn't raise my arms. He walked with me so my muscles wouldn't atrophy. He has gone to every chemo appointment with me. When my hair started to fall out, he shaved my head. He has taken care of the kids as I've been sick and tired. He singlehandedly purchased, delivered and installed a new washing machine when ours broke on the same weekend as my 4th and worst round of chemo. He gets me mint tea and cookies to me when I go to infusion because infusion is long and cold. He tells me that the peach fuzz on my head "definitely looks darker" and "for sure is longer" than last week. Now he is supporting me as I am skidding, dragging and crying toward the finish line of chemo. I love him and I know that he loves me. Someone who didn't would have checked out of this circus a long time ago.

This is our latest picture together. At the chemo "spa" last summer. Maybe it's time I started letting my picture be taken. Maybe after a few more eyelashes grow in.

Anyway, happy anniversary, Chris! I love you. Thank you for everything. 

Turkey, Trees, and Cousins

Since I last blogged Thanksgiving has happened. My family came to town and we had lots of fun. The girls love spending time with their cousins.

We actually decorated a Christmas tree. I am particularly proud of this accomplishment this year. 

Today we were able to attend Mila's presentation in Denver. Mila is the daughter of Brian, Chris' brother, and Virginia, his wife. She is adorable and happy. The presentation ceremony was beautiful and Emily and Jane cannot get enough of their baby cousin. 

Here is the lovely little family along with the Godparents. Virginia has been one of my guiding lights through surgery and chemo. I can't express what it means to me to see her 8 years from her diagnosis, with a sweet baby who looks so much like my own little girls. 

We traveled to Denver the night before because I have treatment every Thursday. Typically, I crash on Friday evenings and stay crashed all day Saturday. That means Chris was a hero on this trip, getting the kids out the door, dealing with complaints and cleaning up vomit that went down right as we got to Denver. I don't know how I would do it without him.

So speaking of which, here is my obligatory update: I have 5 chemo treatments left. It will probably take more than 5 weeks to finish up, though, because I will probably have to push at least one treatment back on account of the nerve damage that is occurring as a side effect of this drug. Other than that, I am tired. I am overwhelmed.

I am overwhelmed by the amount of work I have to do in every aspect of my life on what little energy I have. But more than that I am overwhelmed by the friends who know exactly what I need and when to take over for me. By my counselors and secretary who frequently don't wait for an assignment before filling a need in the Primary. I love these ladies. By my friends who know I would rather collapse than ask for help. So they do things unbidden and unnamed. Such as decorate my porch. Every month. I have no idea who does it, but I love them.

Mostly I'm overwhelmed by my husband who attends every infusion with me and provides me with mint tea and figures out how to get around the blocks on Netflix and Hulu that the hospital has put on their wifi. And who helps out with science projects and who cleans up puke. And who tells me I am beautiful when I am not. Someday I will make it up to him. With a really ridiculous car that is totally age inappropriate. Because he's earned it. 

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.