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We have a plan.

April 30, 2018

Jonathan and I met with Dr. Z this morning, and we decided to do chemo.

We talked about the targeted therapy, and while it is a good option, it wouldn’t be his first choice for me. He told me that if his wife were the one sitting in my chair, he would recommend she do chemo. That this is the kind of thing where you’re probably going to get one shot, and you want to make it your best one.

I told him that I wanted to do whatever was going to give me the best chance of getting rid of cancer. That I had made peace with chemo. I think he was relieved to hear that. It seemed that he had presented the targeted therapy as an option if I was unwilling to do chemo since that’s the attitude I had when I first met him. The other drug may be a good option for after I’ve finished chemo though.

We spent the rest of the appointment talking about what it’s actually going to be like. I have to get the port put in this week and get an EKG. My first treatment will be next Monday 5/7, and if all goes well, I’ll have another one on 5/21. We are going to California after school gets out, and I appreciate that 1. he says it’s important for us to still go, and 2. he wants me to have the treatment early enough where it doesn’t ruin our trip. I’ll be doing the AC-T regimen with 4 doses of AC and 4 of T. At about one every two weeks, this will last through almost the end of August.

I love to have a plan, so this is good for me. The way I imagined it today, one side of my yard is where we want to be. Cancer free. The grass is green and beautiful. The ground is solid. But between me and that good place is a whole lot of garbage. Mud. Thorns. Maybe fire or coals. Hard stuff. And the only way I’m going to get to the good place is by taking that first step into the mud. I can’t get there if I never start walking.

The pharmacists came in and talked us through all the drugs, and then the drugs for the drugs… Ugh. The side effects. Ugh. Part of me says, maybe it won’t be that bad. We are making plans for ways to mitigate the side effects. Ways to support my body. Maybe I’ll get off easy. Then the other part of me knows if it is even half as bad as they say, it’s going to be a rough summer.

But many people have done this and continue to do it every day. My goal is to be another one of those women that tells you about that time 25 years ago when they had breast cancer and had to do all the things and it sucked, but look at me now.

There are a ton of other places I’d rather be than at the doctor’s office, but there’s no one else I’d rather be with than this man.

distracted and a little numb

April 29, 2018

When I wrote about grief the other day, I was feeling pretty good. I know that this is a hard time, but I felt like I’ve been dealing with it well. Crying when I need to. Talking to others about it.

Then a few hours passed. I realized that my phone had barely left my hand. I remembered the other night when I was hiding in the bathroom scrolling through Instagram when Alida had asked if she could read to me. I remembered a couple nights ago when I somehow made a bottle of wine disappear with only a little help from Jonathan. I realized how much time I had spent picking at the bumps on my arms – a known anxiety/distraction cue for me. I thought about how I stay awake late into the night even when I’m wiped out – again, scrolling scrolling scrolling. (And that is after taking sleeping pills that don’t seem to work.)

So maybe I’m not doing as well as I thought. I don’t even know how to begin deciphering what is normal life distracting and what is cancer related though. We all have bad days. I’ve been guilty of distraction for a long time. I’m pretty sure all parents hide in the bathroom and look at their phones sometime. We all have days where we just want to check out.

Our pastor talks about it frequently – good things (like Instagram and wine) become bad when they are used to distract us or cover up something else. We don’t want to deal with our pain, don’t want to face our shortcomings, don’t want to think about something uncomfortable, so we distract ourselves. We don’t want to feel the hurt of loss, so we numb ourselves.

Recognizing that I am numbing and/or distracting, regardless of the cause, has been good though. It’s made me read a book instead of the internet, go outside every beautiful day this weekend, drink lots of water, and actually watch a whole movie with the girls today.

I started writing this yesterday, but it’s hard to write something that you can’t tie up at the end. I haven’t had any epiphanies in the last 48 hours. I’ve actually cried a whole lot, and I’m not even sure why. I’ve talked to a lot of people, but sometimes I get tired of hearing myself talk about how I’m doing and how I feel. It just feels like blah blah blah. I don’t even know what I’m talking about anymore. But for the sake of transparency, I felt like I had to include a follow-up to the grief post.

Tomorrow we see Dr. Z. I’m ready for this appointment. I need to know what’s next and get started. But it also scares me. It scares me because I know it’s going to be hard, and it scares me as I keep realizing that I’m doing this because I have cancer. Cancer that won’t easily go away. Stage 3 breast cancer that has already cost me one of my breasts and 8 of my lymph nodes.

I sat in church this morning and watched people be baptized. Kris, our pastor, reminds each one of them that wherever they go and whatever they do, they won’t be alone. God will be with them. I’ve heard this a lot lately since we’ve had baptisms every Sunday since Easter. Today, he also mentioned Psalm 139 where it says even the darkness is light to God. I feel a bit like I’m about to start walking through a dark, scary valley. But it is comforting to know that it isn’t dark to God. He can see what’s ahead of me, and will be with me as I go through it. As someone who has often struggled with the reality of an invisible God, being in a place where I believe I will experience His presence in the most real way is something I can look forward to.

We also sang the beginning of this Psalm at church today. I’m including the whole thing because it’s something I need to be reminded of.

Psalm 121

I lift up my eyes to the mountains—
    where does my help come from?
My help comes from the Lord,
    the Maker of heaven and earth.

He will not let your foot slip—
    he who watches over you will not slumber;
indeed, he who watches over Israel
    will neither slumber nor sleep.

The Lord watches over you—
    the Lord is your shade at your right hand;
the sun will not harm you by day,
    nor the moon by night.

The Lord will keep you from all harm—
    he will watch over your life;
the Lord will watch over your coming and going
    both now and forevermore.

Grief is a sneaky bugger

April 27, 2018

Grief is a sneaky bugger. Though I have grieved a number of things in the last decade, I have a lot to learn in understanding and dealing with grief. I’ve actually had this article open on all my devices for about a month now: Stages of Grief After Losing A Breast. It’s not so much for guidance as to remind me that this is a process that I know very little about. Some of the info in that article has been helpful, but I need to revisit it and other grief resources as my feelings change.

After the initial pre-surgery sadness of losing my breast, I feel like I’ve been doing alright emotionally. I figured it was good once I stopped being freaked out by seeing my scar. That it meant I was getting better and moving forward. But the last couple days have been an emotional shock. Grief creeps up on you. The night before last I found myself crying for my lost breast and it has continued off and on since then. It really caught me off guard.

Thankfully, when I had my first miscarriage, a wise person told me to just feel however I feel. (I’m sure she said it better, but that’s the gist of it.) That grief doesn’t follow a set of rules. Some days you may feel nothing, and other days you may be overcome by feelings. This was helpful for me, particularly in the beginning when I felt nothing. Was I bad because I wasn’t more sad over my miscarriage? No, this is how I feel, and that’s okay. Then a couple weeks later, I was hit unexpectedly by sadness at our family Christmas party of all places. It makes no sense, but trying to make it fit into a certain pattern is going to make it even more frustrating.

So this week, as the rest of my body heals and gets closer to normal, the realization that my breast is gone for good has hit me really hard. The loss doesn’t make sense. It’s terrible. I miss my breast. It was been part of me for a long time. It bore the scar of my first lumpectomy. It fed my three girls for years. It made up half of my cleavage, which I happened to like a lot. Did you know that when you lose a breast you also lose your cleavage?

I wonder if having the bra with padding has had anything to do with this sudden grief. It makes it easy to forget most of the day that my breast is gone. So when I take it off at night, the scar, the blank space on my chest, is once again shocking and ugly. I’m not going to stop wearing the bra, though, so maybe it’s irrelevant whether it’s contributing to grief or not. I suspect I’d feel like this regardless.

I know I said shocking and ugly. I don’t think my body is ugly now and I don’t feel ugly, but there’s no way you can’t say a mastectomy scar isn’t ugly. At least at first. Especially when you consider what it’s replacing. And when you factor in that it represents cancer – it’s ugly. The first time Elin saw my scar, she put her hands on her mouth and said her throat was coming up. It makes me laugh because it’s such a funny way of describing her physical response, but it doesn’t surprise me.

So here we are, 3 weeks post-mastectomy. I’m getting antsy to figure out and start the next phases of treatment. I want to completely get rid of this cancer and be able to put this behind me.  I think I’m doing well considering the circumstances. I’m thankful not to have any complications or infections. I have a very clean scar that is healing nicely. I have great range of motion in my arm. I am surrounded by people who support my grief, who encourage me to cry if I need to. And for these things, I am thankful.

PS. During this first week of Style School, we’ve been given a song to watch the music video for before we get dressed. Yesterday’s was “Brave” by Sara Bareilles. I think I’ve heard this song before, but watching the video made me so happy (and made the song make much more sense.) It’s so fun and made me brave enough to wear the giant earrings I bought for NYE in Vietnam 7 years ago, but always felt were “too much” to wear again.

The calm

April 24, 2018

The last week has been quiet because I’ve started to feel fairly normal and have therefore resumed many (maybe too many) of my normal activities. In general, I have felt very good, had a lot of energy, and been in good spirits. The last three days, however, I have felt incredibly tired around 4pm. I think it’s probably my body telling me to dial it back a little. All the glue is off my incision so it looks better, and I’ve been able to sleep on my right side for the last couple of nights.

Last week I wrote about my visit with Dr. Z where we decided that chemo was the best option. He had mentioned another treatment that would be a possibility if I were to push him for other options, and since then, we have had several other doctors speak enthusiastically about this therapy. It’s a targeted therapy versus toxic chemo. It has its own unpleasant side effects (I’d have to be put into temporary menopause), but it isn’t the poison that chemo is.

We haven’t been able to get in touch with Dr. Z to find out if this is something I can realistically consider, which has been difficult. We were in chemo mode, counting out weeks of treatments, starting to think of who would cover certain weeks, and then all of the sudden we are thinking maybe there’s another option. It’s a good option, but the not knowing is hard.

Tuesday and Wednesday of last week, I felt really antsy and wanted to get all the info RIGHT NOW. Thankfully, by Thursday, I was able to remind myself to enjoy the calm right now, even if it is the calm before a giant, unknown storm. Now, I’m getting antsy again. If we don’t hear from him this week, we will at least know more on Monday when I have my next appointment.

In the meantime, we celebrated Alida’s 6th birthday and have been doing other normal, fun things. I got to be the mystery reader in her class on Friday (why does reading in front a bunch of 5 and 6 year olds make me so nervous??), and then after school she and I went to the Habitat ReStore. We found a dresser for her room, and since then I’ve been cleaning it up and making it look fun – but only on the inside. I painted the bottom and sides of the drawers and then decoupaged pictures from some kid magazines into the backs of the them.

I love doing this kind of thing. Honestly, most days I’d rather be working on a project like this than taking care of my kids. I guess, in all fairness to myself, dressers are less demanding, they don’t talk back, fight with their sisters, dislike the food you give them, or repeatedly come out of their rooms when it’s time for bed… and the results of your work are immediate.

I also started a class. It’s called Stasia’s Style School. Check it out and check her out. It feels kind of ridiculous to be taking something on right now, but I also think that this is a good time for me to be putting into myself. I found her several months ago on Instagram, and her language with regards to our bodies, the way we view them, the way we dress them, really resonated with me.

Stasia’s Style School is a 5-week online class and lifelong sisterhood that will teach you how to identify YOUR own personal and unique style so you can be the BRAVE BOLD BEAUTIFUL woman that you are… EVERY DAMN DAY!

Because of this, I decided it was time to get my fake boob. I want to learn how to dress my body in a way that I love and feel good about, and having to factor in the minus-one-boob thing every day was going to distract from the process. So Jonathan and I went to the store at Northside Hospital where you go to get these things. I was a little disappointed to find out that it was too soon to get the real deal. They usually want you to wait 6-8 weeks so you don’t have problems with swelling. But she said she could give me something for now.

So I got a “wellness bra” that’s basically a gentle sports bra that has pockets to put padding in. She gave me a puff (basically a little pillow shaped like a kidney bean) that has an opening where you can take the stuffing out according to your needs. So here I am, a 37 year old woman stuffing my bra. It makes me a laugh a little thinking about it. I put it on this afternoon (I was in my pajamas working on the dresser until 3pm), and it really made a big difference in how I approached my closet (I had a style assignment).

The lady at the store, Jasmine, was the epitome of the kind of woman who should be doing her job. I told Jonathan, basically everybody she meets in there is in a super vulnerable place – either women who’ve just given birth there for nursing bras and gear or post-mastectomy women who want to look like they have breasts again, and she had such a gentle, caring manner. It was a really nice experience.

No, it’s not okay.

April 17, 2018

One of the lessons I’ve been learning lately is to stop saying (specifically after explaining what’s going on with my cancer) “but, it’s okay.” I think it’s our natural reaction to want to cushion the blow when delivering bad news. My sister has been telling me for a long time to stop worrying about how people are going to receive my bad news. I always want to put a happy spin on it or something.

Jonathan talked to the school secretary and told her what was going on. He finished with, “but, it’s okay”, and thankfully, she said, “No, it’s not.” I’m not throwing him under the bus – I do it too. I said it to a friend who is also a therapist and she set me straight. She said if you’re saying to someone, “I’m ok” there’s a good chance you’re more worried about making sure that they’re not feeling too uncomfortable than you are about actually being honest about how you’re feeling. Dang…

The truth is, sometimes things are just terrible. They suck. They are bad. I got my teeth cleaned today and the lady was telling me how her husband works third shift so they see each other one day a week, “but it’s okay.” Girl, it sucks. Only seeing your husband one day a week is miserable. And just because your situation isn’t as bad as the next person’s doesn’t make it any less sucky. Just because you don’t have cancer doesn’t mean it’s not a big deal that you got fired. There’s always someone in a worse spot than you, but that doesn’t minimize what you’re going through. I’m not saying go around and tell everyone how bad things are all the time, but don’t deny it when your reality sucks.

And speaking of sucky things, we saw Dr. Z yesterday. Ever since my conversation on Friday where I found out about all the lymph nodes, I had been thinking that he was going to tell me I need to do chemo. And I was right. He feels like my surgery in the fall was inadequate, and while he doesn’t know for sure, he suspects that the current cancer is a variation of the original one. The hormone receptors aren’t as strong, but my hormone levels had been significantly reduced following my fall surgery. It sounded like sometimes the cancer can adapt. He said if I don’t do anything besides surgery, there’s about a 50% chance the cancer will recur within the next 3 years, and it would likely be somewhere else (liver, lungs, bones). With chemo and radiation, it brings it down to about 30%. There’s a 40% chance chemo could drive me into permanent menopause… Ugh. I still have to heal before I can move forward, but I have an appointment with him in 2 weeks to talk about it more. Waiting to check out, I met two ladies who confused my hair with a pre-chemo buzz. It will never stop being confusing.

We left the office and drove home, asking each other questions and discussing the appointment. Christine ask what scared me most about the whole thing. Thinking about dying. Having to face that I really have cancer, stage 3 cancer, and if I don’t bring out the big guns, it very well may kill me. And I don’t want to die. Also, thinking about getting a port put in/having a port also gives me the heebie jeebies and makes my stomach turn.

When we went to Unicoi a couple weeks ago, we had to wait to check in to our cabin, so we went down to a playground and creek area. The kids started playing with other kids, talking to parents and introducing all of us. I talked to a mother who had four kids there. We chatted and eventually told a little bit of our stories including my upcoming mastectomy. I noticed that she was wearing a bracelet that said “peace”. It made me think of Betsy, a friend and also a mother of four, who had written the same word on her front door or somewhere super obvious during a time when they really needed it in their home.

We ended staying in different parts of the park and didn’t run into each other again like we had hoped, but a few days later, I got a friend request from her on Facebook. I had thought about looking her up, but didn’t even know their last name. I’m sure one of my girls told them all of our entires names, as they tend to do (good thing identify theft isn’t a concern…) She messaged me saying how nice it was to meet us and asked me for our address.

Last week I was sitting out back (I think it was my first day outside since surgery), and Jonathan came out with the mail. He asked if I knew anyone in Dalton, and handed me an envelope. In it was the bracelet I had noticed on our friend at Unicoi. She said she had felt compelled to give it to me since we met and was praying for us to have peace, whatever that might look like, during this time.

Like I said before, I don’t like to point out gifts I’ve been given. I’ve received so many beautiful, thoughtful gifts and don’t want to imply one is better in some way. But bear with me – as I went away from that appointment, I felt so calm. I had expected the news, but to be able to just accept it was really surprising to me. I can’t tell you how many times over the last 8 months I’ve said and thought “I just can’t/ won’t do chemo”. The destructiveness of it scares me. I always feel like it causes more problems than it fixes. I’ve had an almost physical repulsion to it, and wondered what I would do if it came down to that.

But here I am. It’s come down to chemo, and I feel okay. I thought maybe I was just numb or in denial, but at some point yesterday, it dawned on me – all this time, we’ve prayed for a clear path. We’ve prayed for peace with the hard decisions we have to make. Peace in our home and hearts. I’ve been wearing that prayer on my body for the past week. Is this the answer to that prayer? The peace that passes understanding? Did God prepare my heart to hear the news so I could go ahead and do what I need to do to get rid of this cancer?

Our pastor says that being brave doesn’t mean you aren’t afraid. It means that even when you are afraid, you still keeping moving forward. I am afraid. I know that chemo is going to be hard. But, I also believe that at this point, it is the best way to get rid of this cancer.

I also know that the current physical state I’m in is much healthier and more able to withstand harsh treatment than if I had tried in the fall. Others have said it better – it may be time for the big guns, but now we have a stronger fort. And Dr. B and the RHM staff will be able to provide me with supportive treatments that will build me up as the chemo does its work.

Parenting and cancer

April 15, 2018

From the very beginning, one of the biggest challenges of dealing with cancer has been the fact that you don’t get to stop being a parent just because you have cancer.

Yesterday, I sat in the yard with two of my sisters and watched the girls run around. It was the first afternoon this week that they were all home at the same time. It’s good to see their faces, but I’m mostly an observer right now. Whenever they come toward me, I guard my right side and brace for impact. They know my reflexes are slow and my reach is restricted, and their behavior often reflects this knowledge.

I watch them play and start to wonder how long I’m going to have this limited, guarded role in their life. I know thinking too far out is a really bad thing to do, but for that moment, I can’t help it. With the most recent news, it’s becoming apparent that me and cancer have a long way to go, a lot of fighting to do. It’s not going to be over when I heal from this surgery. I’ve already lost time with them, and wonder how much more I’m going to lose. I start to cry thinking about this.

This is one of the many reasons that cancer sucks and is terrible. Not only is your body struggling, but you are missing out on life. Those you love are missing out. It robs everyone, and that sucks.

When I was little and had cancer, my older two siblings spent a lot of days and nights at other people’s houses. I remember hearing about my older brother being really sad because my dad had to work and my mom was away with me, and I felt so bad and would cry thinking about it. I know that it wasn’t my fault that they went through that, just like it isn’t my fault now, but it still sucks that people you love are suffering.

Another thing that’s been really hard about parenting with cancer is that it is even more difficult than usual to be present. There’s always something else that needs my attention. I have an appointment and then after the appointment we race to pick the kids up, but while we’re doing that I’m on the phone scheduling other appointments, talking to family/friends. Then we get home and I start looking up the next medicine or lab/pathology results, all the while the kids want to eat, play, whine, fight, or just be held.

 

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I find myself being more impatient with their needs and noise, being more easily annoyed, less consistent with discipline. Then I feel really terrible about it. Thankfully I have people who speak truth into my life at times like this and remind me that most people with little kids feel this way at some point – cancer or not. I also have to constantly remind myself that all that I am doing is for them. So whatever absence this cancer treatment is causing will be made up for by my long term presence and health.

Another major cancer-with-kids stress has been dealing with childcare. Thankfully, every time I’ve reached out, I’ve received generous help, but the different pieces that had to fit together for a long day of treatment would blow your mind. Prior to my surgery, I finally sat down and made a spreadsheet that laid out our schedules for the entire month. There are way too many moving parts, and having them all in my head was making me lose sleep every night. Now, at any given time, there are multiple people who can see where the kids are, when Jonathan is working, etc… and that has given me a lot of peace.

Switching gears entirely – today I went to church. It was so good to be there. Getting dressed to leave the house is complicated though. I’m not trying to pretend I have two breasts, but I also don’t want to feel like a spectacle. Yesterday it took me three shirts. Today, only two. I thought that having a picture on the front would disguise the whole one breast thing, but it made it more obvious. I know that how I feel leaving the how is going to change day by day, so I’m not sweating it too much right now.

Tomorrow morning I see Dr. Z. I feel like I’m prepared for whatever he tells me. Looking forward to having more info regardless.

 

Friday the 13th

April 13, 2018

Because it’s late, I’ll get right to it – Dr. G called me today. The pathology report came back and it wasn’t what they had hoped for. The breast contained multiple masses, and 4 of 5 lymph nodes contained some cancer. I already felt like we had made the right decision (mastectomy) regardless of what they might find, but this confirms it.

Dr. G was really surprised about the lymph nodes. (I am tired of surprising doctors with how sneaky and ambitious my cancer is.) She recommends radiation, which I knew would be the case if there were more nodes involved. She’ll make an appointment with a radiation oncologist soon. Dr. Z was also at the tumor board this morning. We’ll find out his recommendations on Monday.

I was standing in Home Depot when she called me. I had told myself several times this week that even though things sounded good, there was still a possibility that it could go the other way, so I wasn’t as shocked like I had been in the past. I got off the phone and told Christine who was with me and then called Jonathan to tell him.

Then a little while later the fear started to creep in. The realization that it’s never going to be an open and close case like I wanted. The wondering whether we were always going to be a step or two behind the cancer. The disappointment that reconstruction isn’t my next or biggest concern. What is it going to take for me to get rid of this cancer once and for all?

A few minutes later, my parents met us there. They are going to plant our garden for us this year and were there to buy some supplies. We told them the news and we all cried together. It’s so disappointing.

We came home and were met by two good friends who had come to visit. The girls were off with different friends so we were able to talk and be sad and mad. We got the pathology report and all took turns reading it. There are so many questions – are the other masses more of the same? More of the old stuff? What about the stuff in my nodes? It’s so much more complex than any I’ve seen before because it’s dealing with so much more tissue. I wasn’t able to get anything helpful out of it, so I’ve committed myself to waiting until Dr. Z can explain it all on Monday.

I’m able to take some comfort in the clear PET scan I got just over a month ago, but even that is a little shaky right now. This cancer continues to surprise everyone, and that scares me.

In case you’re wondering why I was at Home Depot… Yesterday I made my second non-doctor outing since surgery. Over the last year (or five), we’ve been gradually repairing and painting/decorating our house. We have finally gotten to the front of the house (some windows had to be replaced) and the living room and front room. So while Christine is here and I don’t have to text her a million photos of paint squares on the wall, we wanted to get these remaining colors nailed down. So over the last two days, we’ve gone twice and gotten 11 paint samples. Both outings were pretty much all I could do for the day, but it does feel really nice to be doing something normal.

I’m so grateful for all the people who are helping/allowing/forcing me to take it easy. For all the people who have picked the girls up from school and brought them home worn out from so much fun. For the people who drop off food so none of us have to think about cooking. It’s all been so good.

 

 

I haven’t had much time to process all of this, but even as I write this I am reminded that a God who is faithful in the details of playdates and little kids is also the same God who will guide us through each treatment. I know that a huge part of the struggle in the next days will be in not letting my mind go to places created by fear. Not following those worst case scenarios trails that lead to despair. To focus on what is true and not worry about what we don’t know. To be hopeful.

I’ll continue to update as we get more info.

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