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Round 7: the doldrums of chemo

August 18, 2018

A week ago Monday, I had my seventh chemo treatment. It was a good and uneventful. We got to see Dr. Z and I asked him what monitoring would look like going forward. He said my next scan will be 3 months after I finish chemo, and then we’ll have some kind of scan every 3-6 months for the first 3 years. These next 2.5+ years are when I’m most likely to have a recurrence. After that, the likelihood drops dramatically.

He mentioned starting hormone therapy after I finish radiation and I reminded him that I am currently on Tamoxifen. He said that I should stop taking it for now (I don’t remember why), and then once radiation is done we will look at a stronger anti-estrogen option for a year. He thinks that because of the aggressive nature of my cancer, we need to follow up with something stronger. I’ll have to get a shot that will make me go into menopause. After doing some reading, I’ve actually been surprised that I haven’t gone into menopause already. It seems like chemo does it immediately to a lot of women.

I remember last fall thinking about taking Tamoxifen and looking at the list of side effects – hot flashes, weight gain, decreased libido – and feeling like I can’t do that to myself at this age. And I still don’t want to do that to myself, but I guess I’ve learned over the last 6 months of recurrence, mastectomy and chemo that cancer doesn’t care what I prefer. I’m not saying these are my only options. I know there are other things I could try. But saying I’m too young for hot flashes, even raging and screaming against these lousy options, isn’t going to prevent recurrence or metastasis.

So I have that to look forward to ;-P

The day continued as usual with the addition of my dear friend Adri keeping me company. She was in town from Massachusetts, and it was such a gift to have time where we could do nothing but sit and chat. I can’t say I remember much of the first bit of conversation since it was immediately post-Benadryl, but it was lovely.

The rest of the week was uneventful. Not terrible. Not great. I needed naps most days, and, for lack of a better descriptor, I felt off for several days. We’ve had my sister’s family staying with us since late July, and on Thursday, they went to Alabama for a wedding and two of my girls went to my parents for a couple days. I was looking forward to having a couple days on my own, but ended up lying on the couch most of the time. As disappointed as I was to not be doing something more fun or interesting, I was grateful for the time to rest, and as I was reminded again, even when I’m not doing anything, my body is working hard.

I continue to have random and annoying body pains. I expected severe bone pain, so I’m grateful it isn’t that, but it is still unpleasant. My legs seem to bother me the most. They feel achy and tight, especially when I’m trying to go to sleep. I know part of that has to do with the steroids. I’ve also started noticing how tired they feel after doing something simple like carrying Elin up the stairs. It could be the several months of minimal physical activity. It could be the chemo. Or the drugs that help me manage the chemo…

On the bright side, my headaches have been much less severe this round, and so far, I have been fever free. Another bonus, albeit a very strange one, is that as far as I can tell, I don’t get smelly armpits these days. I’ve even asked other people close to me just to make sure there wasn’t something wrong with my nose. How weird is that? I’m curious if this is a chemo thing. Does it kill the bacteria that make you stink? It’s so strange.

The hair on my head keeps growing but is very sparse, so I still cut it every couple weeks. My eyelashes continue to fall out. I have some large gaps on top and almost none on the bottom. I find myself spending a great deal of time on my makeup before I leave the house. Liquid liner and a brow pencil are crucial in going from cancerface to Graceface.

I started writing this on Monday and now it’s Saturday. It’s been a good week. I’ve felt good and been able to do normal things. We went to a baseball game, I worked in the yard, and went to work (I work as an executive assistant part part time.)

I’ve been in a weird place during these last few treatments. I feel good, but not good enough. I’ve lost motivation to do things that I know will sustain me physically, emotionally and spiritually. I don’t have the sense of desperation that I had earlier in this cancer process, which is good, but I think it’s left me in a place of stagnancy. Doldrums. Like I’ve been eating rice crispies for a month, and then wondering why I feel weak and tired.

We talked to our pastor last week who encouraged us to just pick one thing that would help instead of thinking, “If only I were exercising, cooking more, reading my Bible and praying more…” It has helped as I’ve gone through the week. I know that God meets us where we are, but I forget it a lot of times. I constantly have to fight the mentality of a works-based relationship with God. This week hasn’t been dramatically better than last week, but there have been moments of peace and awareness of God’s presence in our lives.

I have so many more things I want to write about, but we are about to commence sibling weekend around here and I need to go put my Graceface on.. My sister Joy and her family live in China and are in the States for the summer. They have been staying with us for the last three weeks, and over the next 24 hours, all the rest of my siblings (coming from Hoboken, San Diego and another from China) will be in Atlanta. It’s going to be a crazy and fun time.

Oh yeah – Monday is my last chemo treatment!

 

Dose 6: five more weeks of this

July 29, 2018

On Monday I had my sixth chemo treatment. The time between doses 5 and 6 seemed to go pretty slowly, so by the time Monday got here, I was ready to get it done. Treatment went well. I was already tired so when I got the Benadryl, I fell asleep for a while. I was so tired throughout that I couldn’t focus on any of the activities I brought, so I ended up being kind of bored. Oh well.

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The 3 hour drip 😩

The next few days were busy and fun. We had out of town friends staying with us to help out. We met up with some of Jonathan’s family who came through town. We had dinner with other friends. My younger sister and her family came into town from China. And I seized a couple days where we wouldn’t be eating at home (and had extra hands to help) to pour an epoxy top of our dining room table.

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I felt good throughout all of this, though I needed to nap a couple afternoons. On Thursday I started feeling achy and by Friday the weird, twingy pains were back. It’s nothing to stop me from functioning, but it is unpleasant. My hips ache pretty consistently and I get pains at the top of my shins and other random spots.

Yesterday, I woke up feeling good. I cleaned up around the house and then went to the local produce market to get some peaches. By the time I came home, I was aching again and so cold I had to wear a jacket while I ate breakfast. It ended up being identical to the fever I had last Tuesday. I felt miserable and stayed in bed for several hours, but by last night, my fever was gone and I felt pretty normal. I decided to stay home from church today to reduce exposure to more germs.

A few days ago, I noticed that my fingertips felt a little strange. We thought it was probably because of all the work I had been doing on the table – sanding, hammering, stirring and scraping. But now, they still feel that way. My index fingers and thumbs are the most noticeable. You know how it feels when you get super glue on your fingers and you can mostly feel but there’s a slight lack of sensation? That’s how it feels. This is normal and, as usual, I’ve heard horror stories about your hands and feet feeling like they are asleep, tingling and hurting. So, so far, so good.

A few other “this body of mine” things I’d like to mention:

Mouth and nose. Throughout chemo, my taste buds have treated me well. I’ve never had major food aversions and have been able to eat just about whatever I wanted. My nose has occasionally discouraged me from things. It’s never been extreme, but reminds me of whenever I was pregnant and the smell of dryer sheets made me gag.

A few weeks ago, I noticed that my nose was really drippy, but didn’t think much about it. I was looking at other breast cancer patient’s Instagrams, though, and saw someone mention their lack of nose hair being the cause of the drippy nose. I’ve checked and while I do still have some hair in my nose, it’s sparse. And since my nose keeps dripping, I’m going to assume it’s fallen out like the rest of my hair.

Over the last month, I developed one consistently sore spot in my mouth. It was where the gum on my bottom left canine was already a little receded and just kept getting lower and more sore. If I did oil pulling a couple times a day, I would feel a big improvement, but it was hard to keep up with it enough to get it healed completely. I went to the dentist last week. My last cleaning had been before I started chemo, so we decided I’d come in after 3 months instead of 6 to make sure that there wasn’t anything bad happening to my teeth. They cleaned the spot really well and the dentist told me to rinse my mouth with water that was salty enough to taste bad. I did it once and it improved so much. Of course, I haven’t done it since then (you know, since it was so much better), but I need to get back to it.

My weight. I had thought that I would lose weight during chemo, so I was a little annoyed when I started gaining instead. But, I told myself that as long as I was doing chemo, I wasn’t going to worry about it. I wasn’t going to weigh myself at home. I have other priorities right now. I also wasn’t totally surprised to be gaining since I knew I was doing a lot of comfort eating and drinking and not exercising at all. The part that bothers me the most is that all the weight seems to be in my belly, so I’m uncomfortable and my clothes don’t fit. My children have asked me at least twice recently if there was a baby in my belly. (This doesn’t hurt my feelings. It just reminds me of what I already know.)

Recently I was on Instagram (again) and saw a lady mention how happy she was to be done with chemo and to be wanting vegetables again. She had also expected to lose weight during chemo, but had gained due to the steroids she was on. She mentioned that steroids cause bloating, carb cravings and insomnia. I was surprised and comforted to read this, since I’ve experienced all of these. I’m not eating total junk, but I’ve been frustrated with myself because I know there’s a strong connection between my diet and my health. I know that ultimately I am responsible for what I eat, but it is nice to know that some of this is medically induced.

That brings me back to Saturday when I was feeling feverish and discouraged. I just want my body back. I want to be more in control of what’s going on in it. To not feel bad for random reasons or be tired all the time. I have about 5 weeks of chemo left. Today, I don’t feel like that is a lot. It’s two more treatments plus one more week from this treatment. But yesterday, it was too much.

Someone recently sent me a shirt that says “grace wins”. I got it the week I got the all-clear scan, so I wore it like Grace wins!!! Yesterday, I wore it again, and it was more of a reminder – Grace wins. It won’t always be like this.

Today we were at the swimming pool and I was holding Alida in the water. I did it once a few weeks ago and now she asks me to do it for a little while whenever we go swimming. (Her love language is physical touch.) We were talking and she said she wished I had never gotten cancer. I told her I did too, but that it would make us stronger as a family or something like that. So she asked how cancer makes you stronger. Geez. I’m not good at these conversations… Jonathan’s mom had breast cancer when he was in high school. Both of them really struggle to remember much about it. I don’t want to forget this, but I do look forward to the day when this is a distant memory that we have to work to remember.

A creek full of cousins

This body of mine

July 18, 2018

Yesterday, I posted online that I had a fever. It was low, but when you’re a chemo patient, 100.5 is the call-your-doctor temp. Maybe even go to the ER. Mine just barely made it over 100, but I did text Dr. Z in case it kept climbing. He said if it did make it to 100.5, he would call in an antibiotic for me. Thankfully we didn’t have to go there. I did end up with a fierce headache that kept waking me up during the night, but this morning my temperature was 98.2, ibuprofen is taking care of my headache, and I feel pretty normal.

I’ve been wanting to write about some of the ways that my body has been affected over the last couple months. The most obvious change is losing my hair. I actually shaved my head with a razor for the third time this morning. Initially, I was hesitant to do it, but Jonathan did it for me the first time (kind of without us really planning to) and I was really happy with it. It felt so nice and smooth instead of the stubbly roughness it had been before. One of the reasons I wanted to buzz my hair in the first place years ago was because I loved how buzzed heads felt, so it only makes sense that I would want a nice feeling head still. My hair continues to grow each week, but it’s so sparse that I can’t imagine not cutting it.

Lashes and brows. Just this week (10 weeks and 5 doses into chemo), I noticed that my eyelashes were becoming more sparse. This is a change that I have really dreaded. To be perfectly honest, my eyelashes are my pride and joy. They are a big part of what helps me feel feminine and beautiful even when my hair is really short (or gone). So it’s no fun to watch them fall out and know that they won’t be replaced for a while. I noticed that the video blogger I mentioned recently did a really nice cat eye (is that what it’s called?) with liquid liner, and I realized I couldn’t even tell whether her eyelashes were still there or not. So I’ve been working on my eyeliner skills. She also has a tutorial on filling in sparse brows during chemo. I’m practicing that too.

I’ve struggled with being so dependent on makeup lately. Summer is usually when I can wear a lot less and still be pleased with the outcome, but the whole no hair, dark circles, and now sparse lashes and brows has made that hard. This is a whole other post that I need to work through still, but I’m trying to view makeup just like I do a well-fitting outfit or flattering accessories. There’s nothing wrong with dressing your body in a complimentary way, and I’ve seen how much good can come from it, so why should I view makeup any differently? Like I said, I still have more processing to do, but it’s something that’s been on my mind.

Skin. Chemo has had a surprisingly positive effect on my skin. My whole life, I’ve had something called keratosis pilaris. It causes bumps on my arms and sometimes legs and face. Because of this, and because I’m a horrible picker, I’ve never had smooth arm skin. Yet, over the last few months, Jonathan has commented that my skin is bizarrely smooth. The skin of my face is also clear and smooth. So #silverlining, right?

Chest and armpit. I never told you about when I got fitted for my breast prosthesis. It was a good experience, but here’s the most interesting piece of information I got from it: since I had my mastectomy, I had been feeling like my right armpit was still kind of swollen. Women know how sometimes you have some fat that sticks out over the top of your bra under your arm. It felt like that really bad on the right side. I had to wait 6 weeks after surgery to get fitted, so I was confused that there was still swelling (since that’s the point of waiting so long.) The lovely fitter told me that it wasn’t swollen and that every woman who has her breast removed has this problem because what held the skin taut (your breast) is gone. So now in addition to having a breast missing, I have this saggy, scarred up armpit. (I have a scar from when they took lymph nodes out last year, and my mastectomy scar runs into my armpit.)

I am, however, getting more and more accustomed to life with one breast. I have some nice bras that I can put the prosthesis is so I don’t have to think about it when I get dressed, but most days lately, it’s just too hot to pretend I have two boobs. I find myself being more okay going in public without hyper-analyzing how my chest looks in whatever I’m wearing. Honestly, I don’t think anyone notices.

One thing that does bother me is that between my right breast being gone and the port on my left side, I still have to be on guard about my chest. It’s hard to have a child sit on my lap and lean their head on my chest. The right side doesn’t hurt at all, but it feels weird, numb and tender at the same time, and there just isn’t much between someone’s little elbow or head and my ribs. And the port is right where they’d lean on the left.

My port has been behaving itself lately. It’s hard to get a blood return about every other treatment, so I have to do all these lean forward/raise your arm/turn your head acrobatics, but it works. It’s still better than an IV. I’m thankful it isn’t permanent though. Per a few people’s advice, I ordered the fuzzy seatbelt covers to use when I drive. They really make it more comfortable. Without it, I usually put the seatbelt under my arm so it doesn’t rub across the port.

The one other area that has been significantly affected by chemo is the one thing I don’t want to write about on a public blog – my intestines and butt. I have no problem talking about poop and stuff in real life, but this is evidently where I draw the line on internet vulnerability. Suffice it to say, one of taxol’s side effects is diarrhea, and I was really excited about that. Said no one ever, right? So, if you’re a cancer patient or someone you love is, and you want to talk about this aspect of chemo, we can chat.

I’m sure there are other ways my body has been affected, but these are the main ones. Last week, I didn’t feel any major effects from taxol, but to say I was irritable and moody would be an understatement. Fever aside, this week is better, and I’m ready to keep moving on with this treatment.

Hesitantly rejoicing and Dose 5: taxol

July 10, 2018

Last Thursday, I had my CT scan. I had asked the doctor if there was a way to check my status since in the past I had gone from clean to cancer in just a matter of months, so that’s what we did. I didn’t look the scan up or think much about it, so I was caught off guard when I walked in and they asked me if I wanted an IV in my arm or if I wanted to use my port. I don’t know why, but it really upset me. While my port does make the actual process of blood draws and infusions easier, accessing it really stresses me out. The nurses kindly accepted my crying while she did it. The scan itself was a piece of cake.

As the weekend went on, I felt anxiety thinking about my next infusion. It’s a different drug and some people have reactions while it’s happening. It also has a different set of side effects, and just not knowing what to expect is hard (even though we’ve learned that things rarely go as expected.)

On Sunday we went to church and the song service was a soothing balm for my heart. We says Aaron Keyes’ “Dwell” which reminded me that I am shielded and covered by my Heavenly Father. No weapon (or cancer) can ultimately prosper against me. This doesn’t mean I will be healed in this life, but it brought me to a more peaceful place of remembering Who is actually in control of my life. This doesn’t mean I didn’t think about what it would be like if the scan revealed more cancer.

Monday morning, I was a ball of nerves. And thankfully a friend reminded me Sunday that anxiety is a natural response and while we shouldn’t feed it, it’s not realistic to think we can make just make it go away. I accepted my anxiety and tried not to let the awful traffic, impending new infusion and scan results overwhelm me.

Before I even went back to have my port accessed I was in tears. I’m tired of being jabbed. The blood draw went okay, but it didn’t feel completely comfortable in my chest. I came out of the room and was met by another patient checking in who said “I know you’re having a moment, but I just wanted to let you know I’m 6 months past radiation. I know what it feels like to be where you are…” I don’t remember what else she said, but she hugged me and blessed me and then later gave me her phone number and email.

Then we went upstairs to see Dr. Z. He came in and said your scans looked good, but let me pull them up to see exactly what they said. He said there was no cancer in my pelvis, abdomen or chest. There’s some calcification in my lower back and a 2mm spot in my left lung that has occasionally been noted, but is not of concern. Then, Jonathan recalls him saying “Congratulations, you’re cancer free.” I think I was in shock, but so happy and relieved. I wish I had asked him a million more questions like “Are you sure?”

I think after the roller coaster we’ve been on in the last almost year with having a clear PET scan and then there being more and now going through all this, it’s hard for me to be 100% thrilled by this news. I don’t think they will ever say that I’m cured, but I believe in the next 3-5 years, my risk of recurrence will have dropped enough that I will be in the clear. Truly, I’ll probably never feel completely in the clear, but the concern will greatly decrease at a certain point. So while I have a long way to go, this is an amazing start. I am hesitantly rejoicing, and un-hesitantly drinking the bottle of Veuve Clicquot that my baby sister gifted me months ago and that we had been saving for a special occasion.

The day continued to be wonderful. I was anxious getting set up for my infusion since my nurse had to warn me about all the possible reactions. She gave me a big dose of Benadryl, so I almost passed out before it even started. They also gave me a steroid and Pepcid in my IV. This dose takes a lot longer than the other one. I had to wait 30 minutes after the pre-meds, and then they started the taxol (or Paclitaxel). Then that’s a 3 hour drip. Thankfully I had no side effects. My friend Charity came to see me again and we worked on some knitting using the actual yarn I’ll make my afghan with.

They had ordered the Neulasta thing to put on my arm again which confused me because last time they said I didn’t have to do it again, but we finally got word from Dr. Z that I didn’t actually have to have it. He said to the PA “She won’t need it. You’ll see.” My blood counts continue to be great, and I’m so grateful. I also don’t have any prescribed medicines to take following these chemo treatments. (I was taking a steroid 2x a day for 3 days following the AC treatments.) I can take nausea medicine as needed, but I haven’t needed it. Main side effects of this one are bone pain and neuropathy/tingling in the hands and feet. So we’ll see how it goes.

The nurse told me the steroid they gave me yesterday tends to give patients a lot of energy for a few days, so “take advantage of it, but don’t overdo it.” So that’s what I’m trying to do this morning. I feel great, but I usually do on Tuesday mornings. I’m going to try to take it easy, but am so glad to be feeling good.

Thank you all for your love and excitement over our news. I hope this helps you understand why I may not be quite as over the moon, but I really am thrilled. It’s a long journey. Some of you have asked whether this will affect the rest of my treatment – it won’t. I’ll still finish out this chemo and then have 6 weeks of radiation in the fall. It’s how they plan for me to stay cancer-free. So we continue to take it one day, one treatment, one scan at a time, giving thanks in everything (or trying our very best anyway).

Praise God from whom all blessings flow.

Better

July 5, 2018

I’ve had to fight back some feelings of embarrassment for what could seem like a desperate over-share in my last post. My logical mind is fine with everything I put, but the other part hates making people upset for/concerned about us and doesn’t want to look like such a mess. Honesty and transparency have always been priorities of mine, though, so I think it would be unfair to leave out these parts.

Things were already starting to improve when I posted, but this week has steadily gotten better and better. I woke up yesterday morning, and went downstairs for my cup of coffee. Some days lately this hasn’t even appealed to me, so I knew that was a good start. I sat drinking it while the girls watched cartoons, and realized that some of the pictures I have propped along the wall could actually be hung. (The wall over the fireplace is going to have multiple things hung and I haven’t gotten it all figured out, so everything is just sitting.) So by 9am yesterday morning, I had the hammer and tape measure out and was putting stuff back on the walls. This was clue #2 that yesterday was going to be a better day. And it was.

Later in the morning, we met up with some friends at a nearby park. I sat under a pavilion while the girls played, had their faces painted and Jonathan played a softball game. A friend of a friend organized the whole thing and included Jonathan’s men’s group. The only thing I did was show up, and it was great. It was low key, not too hot, and fun. We came home in the afternoon and took naps. Since we had put our pajamas on, we decided to stay home the rest of the day. We watched a movie, painted fingernails, and I started putting new maps on the dining room table.

In retrospect, I think part of this past week being so hard was the realization that the effects of chemo are cumulative. The way I had been thinking about it before was that Treatment 1 = Treatment 2 = Treatment 3, and so on. Even though my immune system is still strong, getting sick made me know it’s been weakened. Therefore, the more accurate view should be Treatment 1 + Treatment 2 + Treatment 3, etc… I have to keep in mind that the second half may not be as ‘easy’ as the first (though it still may), and that is hard to know.

There is another mother at the girls’ preschool who is dealing with breast cancer and is currently going through chemo. She’s ahead of me, but with a different diagnosis and slightly different regimen. Her blood counts have been dangerously low for her last few rounds, and she’s had to miss or delay at times. On Sunday, she ended up in the hospital with a neutropenic fever. (Thankfully she went home Tuesday.) It was scary to see her go through that. Scary to know it could also happen to me. And a harsh reminder of how evil this disease is and how toxic the medicine we have to fight it with is. It also left me thinking “how am I complaining about feeling woozy and tired when she is in the hospital?” I know this isn’t true, but it still comes to mind.

Thank you for all your prayers for me physically and for our family. We’ve really felt them. Jonathan just took the older two to my parents for the next couple days, so that will be fun for them and a good break for us. Elin has a couple play dates lined up, and will enjoy her only child status the rest of the time.

Today, I’ll have a CT scan. It’s my doctor’s response to me asking them to check and make sure I still don’t have any spread to other areas. Please pray for a clean scan.

Dose 4: when you think you know what to expect

July 3, 2018

I started writing this yesterday after a fairly unpleasant weekend. It’s hard to write because it feels so whiney, but I have to remember that there’s a difference between sharing negative news and just being a complainer.

I had my fourth dose last Monday. Tuesday and Wednesday I felt normal and didn’t want or need a nap. This is a good thing because on Wednesday, Jonathan got a stomach bug and was out of commission throughout the afternoon and evening, and then spent Thursday recovering. By Thursday evening, it was the blind leading the blind – me griping at him to get up and help with bedtime because we’re ALL tired around here.

On Friday, I was tired enough to take a 3 hour nap, and did the same again Saturday morning. I was also feeling bad, but in a nondescript sort of way. I felt lightheaded and woozy a lot. Uncomfortable in my own skin. My mouth felt papery. I had to change my pajama pants one day because they had been washed somewhere else and the smell of the detergent was overwhelming me. When I slept, I had dreams that left me feeling disoriented. I was having a hard time going to back to sleep if I got woken up during the night or early in the morning.

On top of all of that, I started what I guess would be considered my period. Some people go into temporary menopause while going through chemo. Not me. I seem to have the period that just won’t quit. In spite of exclusively breastfeeding, I always got it back quickly after giving birth. And now, in spite of being on tamoxifen and having chemo, I’ve had it twice. Granted, the frequency and duration have changed (I can tell you all about it if you’re really interested). I’m not saying I want to go into menopause, but the alternative of now having a completely unknown and unpredictable hormonal cycle is really unpleasant.

We were also really struggling with the girls. While we never regret having three children, we do have to pretty regularly remember that we didn’t do ourselves any favors by having them so close together (3 in 39 months.) We’ve never had the luxury of dealing with one person in their terrible twos/threes/fours. It seems like it’s always multiples in multiple hard stages all at the same time. We have one child who never stops talking and making noise. Another child who is exercising her right to defy. And another who is a combination. They aren’t bad. It’s just a lot. It’s a lot of noise. A lot of people who want and need to be heard.

I also struggle with some a lot of mom guilt here. I always wanted to be a mom who loved having her kids home during the summer. I didn’t want to be counting down the days til I could send them off the school. But, in spite of them being in summer camp three days a week, these last few days were bad. Not sustainable. Throwing kids in bed at 6pm just because no one can stand to be around each other anymore is not a blessing. (By the way, they wake up at 11pm when you do that. That’s not a blessing either.) I know I need to give myself grace for what we are going through, but we had a couple ugly days in our house.

Also, on Friday I went online and saw the results of my tumor marker that had been taken last Monday. I went from 28.8 on March 5 to 33.7. I couldn’t imagine how an increase was possible since I had had my mastectomy during that time. I told myself to wait until I could talk to Dr. Z to think about it, but it still sat in the back of mind like a dark, heavy stone.

To spare you the agony of waiting that I went through, on Monday, I finally googled tumor markers during chemo, and sure enough, most people’s go up during chemo. I also texted my nurse, Karen, who said the same thing “they go up before they go down.” So that is now a relief, but I didn’t know that all weekend as I sat with that news.

On Sunday, I went to church and was a hot mess. Our pastors asked how I was before the service and I started crying – “Obviously, I’m great!” I was tired and discouraged and depleted. And I felt lousy. We had some good conversations, got prayed for, and I went home to take a nap. I lounged around the rest of the day, then I woke up late that night feeling nauseated, and ended up throwing up. I was kind of happy to know that there was something else going on since this was so out of the norm for post-chemo. I still felt bad yesterday, though not nauseated. Today I feel a little better still.

The whole feeling bad thing is weird. I want to separate what is caused by chemo and what isn’t, but truly, everything is chemo related right now. Normally if I got a stomach bug like Jonathan had, it would last me a day too, but since my immune system is already low, it’s taking me days and days to get over it. It’s making it hard for me to think ahead to my next treatment because I still feel bad. It makes me concerned about the rest of the summer because I have no idea how I’ll feel.

I was just watching some videos by Dee Doherty. She’s a video blogger who tells her breast cancer story on YouTube. (She’s entertaining and interesting.) She went through the same AC-T that I’m going through, and she and her husband both agreed that it’s impossible to make a plan because every treatment goes differently. And that is hard for me too. I like to know what’s coming. I think because of how well I did with dose 3, I didn’t plan for much help last week, but then Jonathan and I ended up taking turns single parenting.

A couple positive things I want to remember from this hard stretch: On Sunday a friend reminded me that when I have these days where I do nothing but lie around, I’m still doing something. My body is always working to kill this cancer. Just like when you’re growing a baby and you’re tired all the time. You can’t see what’s going on, but it’s important work. Also, I got an email from a lady yesterday telling me “This time will not be wasted… The moments you might feel have been lost due to your current battle, God redeems.” That was encouraging on its own, but it also reminded of a friend who told me that just as God prepared us for this, He has also prepared our kids for it. They aren’t an afterthought and He will meet their needs when we aren’t able. Oh yeah, I can’t forget this – this morning I was sitting on the floor and Elin put her hands on my cheeks and said “Mommy, you’re so beautiful.”

So now I’m getting my self-care and asking-for-help pants back on, drinking tons of water and sleeping when I feel like it. We’ve also had some good conversations about the girls and ways we can make our days better. So far so good. I pray that this week continues to improve and that I have some normal days before next week.

Halfway

June 25, 2018

Today I had my fourth dose of chemotherapy, which means I’m halfway done! Besides being my fourth dose, it was also my last dose of the AC part. This means no more Neulasta devices on my arm. No more nurses in hazmat suits injecting the red chemo. Hopefully no more concern of nausea or mouth sores (though I haven’t really struggled with either.) The second half of my regimen, taxol, is said to be easier than the first, so I’m looking forward to that.

The last few weeks have been pretty good. We were in California and Tahoe for one of them, and came back here for my third dose on June 11. Jonathan had a lot of days of work when we got back so my sister Christine came to stay with us for almost two weeks.  I was really tired as I had been before, but didn’t really have another symptoms. I took a two hour nap just about every afternoon that week. I had a little peach fuzz that had started to grow back and about half of it fell out after my next treatment.

In spite of the tiredness, Christine and I were still able to paint the front room that week by working a couple hours here and there. We also bought a twin bed frame for Alida off the FB marketplace and started refinishing it, and started redoing an ugly cabinet we had been storing the games in. A friend also came over one afternoon with some peaches and tomatoes and we made peach butter and salsa! We literally did things in fits and spurts all week as my energy (and Christine monitoring my energy) would allow, but it was so gratifying to be doing normal things.

Giving new life to old, ugly furniture.

Later in the week, though, I started to feel the emotional effects of being so tired. I think on Thursday I had moments of “how could I survive if my whole life felt like this?” and feeling like I’ll never have a normal life again. It’s hard to not be able to do the things I want to do and be with and care for the girls how I want. Usually we know that it’s temporary, but I think anyone who has been sick for a while knows that you have those “is life always going to be like this?” days.

I also started to think about the possibility of metastasis. (This was probably another emotional effect of my exhaustion.) I have no reason to think this will happen, but given the ever-surprising nature of my cancer, I put together a few different conversations and some random coughing I was doing and started thinking about a less optimistic future. It’s no fun to even tell people you are worried about it, but I imagine that everyone close to me thinks about it sometimes. It’s obviously better not to dwell on negative outcomes, but it’s impossible to keep it from coming into your mind. I did eventually share my fears with a few people, and they eventually became less bothersome.

So while I’m on the subject, I’ll fast forward to today. I had to see my surgeon this morning before my blood draw, because last Thursday, I felt like a needle was trying to stab its way out of my chest near my port. By this morning, it had (of course) resolved, but we still went in. Dr. G said that there are three permanent stitches necessary to hold a port in place. They have to have longer tails before they are thicker material, and sometimes the tail flips around and starts stabbing outward. So it’s normal, and she told me how to massage it around should I happen again.

While we were there, I asked her about some “bright spots” in my lungs she had seen on my PET scan in March. I told her how I was concerned about this given how quickly I went from all clear (October 2017) to having cancer again (February 2018). First she said that these types of bright spots aren’t unusual and are usually indicative of some type of small infection (not her exact words.) The spots are also too small to identify and too small to biopsy. Second, she told me that she thought they just didn’t get all the cancer in the fall. That it wasn’t some kind of crazy cancer, rather it wasn’t all removed to begin with. I told her how my previous surgeon how dubbed it the serial killer cancer. She didn’t agree. She was really happy to see how well I was doing and pushed our next visit until after I finish chemo. Says she just wants to see how her patients are faring and since she’s seen me, we are good. It was such an encouraging and comforting visit.

Next I got my port accessed and my blood drawn. They are also doing a tumor marker this time. I’ll find out those results in a few days. We went upstairs to see Dr. Z who didn’t have much to say except that I was doing great and that I’ll have a CT scan in the next couple weeks just to give me some peace of mind. Also that one of the main side effects of taxol is tingling in your fingertips.

My friend Charity has been offering to refresh me on knitting (I used to knit about 10 years ago). I was hesitant since I don’t want to make scarves in the heat of the summer, but she reminded me about the book we both have where you learn all the different ways of knitting by making 64 different squares that will eventually become an afghan. Since making an afghan is on my bucket list, I agreed, and she came up to sit with me during my treatment. I haven’t had anyone sit with me or visit since it’s usually only a couple hours and is preceded by other appointments that Jonathan joins me for, but it worked out really well today so he could leave, do some errands and get the kids from school.

The whole afghan will not be these colors. We were just practicing 🙂

I was surprisingly excited when the nursed unhooked me at the end of the treatment. I think as much you can know that time will pass and treatments will pass, sometimes it’s hard to believe it. Yet here I am, finishing the last of “the hard treatments.” Halfway through this crazy chemo ride. I still have to get through the effects of this dose, but I’m hoping that knowing I won’t have to go through these particular side effects again will help me.

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Peace out, AC!

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