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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!

On being (involuntarily) bald

June 4, 2018

Last week, I wrote that my hair was starting to fall out. I debated cutting it off Thursday, but wasn’t sure where or how to do it. I know some cancer patients smooth shave their own heads, but since I’d never done it before, I was nervous to try. I had also been told that it was dangerous to use a razor in case you got nicked and it got infected.

On Thursday, I bought a beautiful sun hat. I got it mostly to keep the sun off my head and shoulders, but also because it was beautiful. I was also shopping for a fedora style hat since I’d borrowed one last weekend and Jonathan said it looked nice. I told him I’ve always avoided hats because I feel like they make me look like I’m a cancer patient. He said, well you are a cancer patient. I know, but that doesn’t mean I want to look like one. I’m realizing that I need to learn to view hats as accessories instead of a just a way of covering my head.

By Friday morning, I felt like it was too patchy and messy to leave it as is. I was also starting to feel the emotions of losing my hair. I find that it takes me a couple days to really respond to hard news, and Friday was right on schedule. I felt constantly on the verge of tears. My energy was also waning as the week went on and I’m sure that had an impact on my emotions.

That morning, some friends came over to help pack for our trip to California. With them watching the kids, Jonathan and I went to find someone to cut my hair. We decided to go to the local barbershop, which I’ve been to before. Since I was feeling really vulnerable, he went in ahead of me to explain the situation and ask if they would do it. I ended up in the chair of a nice man who suggested just taking it down to a 5 o’clock shadow length, but it was long enough where it still came out when I touched it, so he cut it all off. I cried a little bit, but no one minded. They were all very complimentary toward me.

When we got home, our friend’s son immediately said he liked my hair cut, but one of the girls said I looked funny. I can’t remember all their exact responses, but they weren’t fans. One of them said they thought people at church would laugh at me. I told her that no one was going to laugh at me because they know why my hair is gone, but that I know it looks different and kind of weird.

I felt really tired and struggled some throughout the weekend. I ended up missing a concert with my dear friend on Saturday night because I was too tired, and knew we’d be up at 5am to go to the airport. I was advised to wear a face mask when traveling, so I did. Elin hated it and kept asking me to take it off. I found a fedora to wear, but wearing it combined with the face mask, made me feel like I was wearing a sign that said “I have cancer”.

Our trip to California was uneventful. Everyone was kind. The girls did well on the flight. I felt really self conscious though. I continued to struggle with how I looked and the fact that 1/4 inch less hair so dramatically changed how I was perceived. I felt like it was suddenly obviously that I was a cancer patient. I also suspected that people were viewing me with pity – that mom has three little girls and has cancer. None of this could be true, but it’s how I felt.

Over the last week, though, I’ve thought more about this shift and am wondering if the change is more dramatic to me than to anyone else. As long as I’ve had my hair short, people have questioned whether I’m in treatment. The other day at the park, a lady said something to the effect of liking the way I wore my hair, and an old man said I had a nice head. I didn’t get the feeling they were commenting based on me having chemo hair.

Whether my hair is as shocking to others as it is to me or not, it’s still been a hard adjustment. It is yet another reminder that I do in fact have cancer. That my cancer is bad enough that I’m having to do chemo. When you go around looking and feeling almost normal, it’s easy to forget, but my shiny, bald head is now a constant reminder. And though I don’t think I look terrible, I don’t like how it looks. It’s not my choice, and that is also hard. It definitely gives me more sympathy for people who experience physical changes beyond their control (like hair loss).

Prior to cutting it, my sister suggested that I anoint my head with oil after the cut. She was referencing the Psalm where it says the Lord will anoint my head with oil in the presence of my enemies. She said this symbolizes me trusting God to heal me through chemo, wisdom and good doctors. It ties in with the prayer my friend sent me asking God to bless the means (chemo) made use of for my healing. Can I view my bald head as a reminder to ask God to bless the work of the chemo?

It’s been over a week since my hair was cut, and my scalp looks almost the same. There’s a tiny bit of fuzz growing, but it’s like all the hair on me has just stopped growing. Thankfully, the rest of my body hair has followed suit. It’s only fair, right? I’d be mad if I had no hair on my head but still had to shave my legs every day.

In other chemo news, last Sunday and Monday I felt really achy. On Sunday I thought it was because of something I’d done on Saturday, but by Monday, my legs and hips were aching really bad. I realized that the previous Monday after treatment, I moved a small desk and ended up in so much pain that I had to take medicine to sleep. I’d been told I would feel achy after I take the medicine to rebuild my white blood cells, but the timing was off. I can’t say for sure that’s what it is, but one week after treatment is supposed to be when your white blood cells are lowest, so I wouldn’t be surprised if there’s a connection. (I know some of this may seem like random information, but I often write with a future cancer patient reader in mind.)

We have been in California for the past week and in Tahoe since Saturday. Here we met up with friends and family including my little brother from San Diego. It’s been a wonderful trip and I’m so thankful to have an extra week to feel normal before I have my next treatment.

Dose 2: My hair is falling out

May 24, 2018

I had my second chemo treatment on Monday. Yesterday, I took a shower and saw a couple little hairs wash down my chest like I had just given myself a haircut. But I hadn’t. I washed my hair, and when I pulled my hands away, there was hair on them.

It’s so weird how much this surprised and upset me me, even when I KNEW it was coming. Granted, I had a nurse tell me it usually comes out 21 days after starting, which would’ve given me until Monday, so I guess I thought I had a few more days.

I thought about why it was so alarming. It’s not like I have a lot of hair to lose. I’m used to very short hair. I think it’s probably just one more reminder of what my body is dealing with. One more thing saying “you have cancer”. Another loss I have no control over.

I pinched at the hair, just to make sure and it came out in little quarter inch clumps. I went downstairs and asked the girls if they wanted to see what it was like. Alida shied away (I don’t blame her- it’s weird), but Farrah and Elin were all about pulling my hair out.

Then I went over to Jonathan and he hugged me while I cried about losing the teeny bit of hair that I have. I’ll probably go to the local barbershop and see if I can get a clean shave sometime in the next few days before it gets too patchy.

Today is dose 2, day 4. This week has gone a million times better than the first week. I haven’t taken a nap yet, but did go to bed at 6:45pm last night. I’ve had enough energy to slog through the closet clean out portion of Stasia’s Style School. I can only assume it’s because I stopped taking one of the nausea medicines except at night. My appetite is decent, and when I get a wave of nausea, I have a vape pen that has been helping.

Today I’m at Real Health Medical for a Vitamin C IV. I haven’t been here since before my mastectomy, so it’s been good to see everyone. They are prepared to support me in any way I need during chemo. Thankfully I just haven’t needed much. The Vit C is a low dose and meant to support my immune system, but not supercharge it in a way that could interfere with the chemo’s work.

I’m hooked up to Penny right now, which is how I have both hands free to type. Yay!

Penny the Port

May 22, 2018

Last Wednesday, I had surgery to install my port. I was surprised to learn that it was a full-on, no food after midnight, anesthesia surgery. I guess it makes sense, but ugh. Another surgery.

The day before and morning of, I felt a lot of anxiety about it. I’m not sure exactly why. I’ve had about a million surgeries, but this time, instead of having something removed, I was having something added. It was upsetting to be back at the hospital again so soon. The nurse was worried about my veins so she gave me a shot of lidocaine before inserting my IV, and let me tell you, it just made it worse.

I woke up from surgery with a painful knot just inside my shoulder blade and my whole left shoulder in a knot. I thought it was the position I was in during surgery, but I was thinking about this last night and I’m sure the amount of anxiety I carried into that surgery had something to do with it. I went home that afternoon and felt good that evening aside from the pain in my shoulder and back. It became excruciating and I had to pull out some old surgery pain killers for it. It was annoying that the pain I was having wasn’t even related to my port. I couldn’t even feel the port location for a couple days.

It was also discouraging because I knew last week was my “good week” and here I was having surgery and pain that was interfering with what little time I had to feel good. I got through the next couple days and felt good enough to go to a concert on Thursday and a party at a lake on Saturday. Both of those were incredibly life giving and fun.

My dear friend Barry, his sister Nancy and I

Watching my hot husband tear it up on one ski – first time since I’ve known him!

I went to the chiropractor on Friday and she said she thought that the pain was a combination of mental stress and physical stress. My body was responding to the intrusion of the port. My mind was using my body to protect the port so I was hunching my shoulders. And it was a generally stressful week with the kids. Some days it seems like they just fight and argue from the time they wake up at 5:30am.

I’ve spent a lot of time over the last year thinking about stress and how it affects my health. I believe stress was a major contributor to me having cancer. From 2010 to 2016, we had no less than 3 major life events every single year including international moves, job changes, local moves, giving birth 3 times, having 2 miscarriages, dealing with depression and many other personal/family challenges.

I learned a lot about the impact of stress on your body when I started at Real Health Medical in the fall. I have been intentional about saying no to things and being conscious of what is too much/stress inducing. I also had a friend point out recently that from the time you are diagnosed with cancer, your stress levels escalate. It seems like even when you don’t feel stressed, there’s some level of it there under the surface. So here’s another painful reminder that I need to continue to manage my stress.

I felt gradually better as the weekend went on, and only had a little pain when I went for my second treatment yesterday. Since I had already done it once, the only stressful part was doing it with the port this time. Every time I have chemo, I have to get blood work beforehand to make sure I’m strong enough for the treatment. This time, since I had my port, they were going to use it. The nurse told me that it doesn’t normally hurt going in, but people can be bothered by the pressure it takes to put it in. Ugh. I was dreading it and wanted to cry. Thankfully, she also told me it was normal to feel emotional and good to cry if I wanted to. So I did, and it ended up not being a big deal at all. It didn’t hurt. And the whole rest of the treatment process was truly so much better with the port.

We met with Dr. Z after the blood draw, and he said my numbers looked amazing – like I hadn’t even had any chemo. We talked about my medicine and I found out that I can just take the Zofran and use the one that makes you really tired as needed. Last week I was taking both of them around the clock. He also gave me something to help me fall asleep since the steroid makes my body feel restless even when I’m exhausted. He said my super power is metabolizing things that make normal people go to sleep, so it might take an elephant tranquilizer to put me out. I agree with the tranquilizer part, but am not sure about the super power part.

Last week when I got the port put in, I had several people tell me how it would become my friend and that some people even named theirs. I posted that online that night, and that’s how Penny the Port came to be. She’s a little bigger than a penny, and costs way more than a penny, but as my friend Annie said “No such thing as a bad friend named Penny. Penny adds life to her friends. She’s never a sourpuss.” So Penny she is.

This morning I got an oncology massage. Last week Jonathan kept encouraging me to get one, but the idea of putting myself into someone’s hands with this weird port and how uncomfortable I felt made me nervous. I was reminded that there a places that specialize in this though, so I went this morning and have continued to feel better in my neck and shoulders. I’m tired now, but I’m still awake which is better than last week. I’m hoping for an early bedtime and good sleep.

Disbelief and reframing

May 12, 2018

I wish I had written yesterday. I stayed awake all day on Thursday a was feeling hopeful. Like, if I’m feeling better already, I’ll just keep feeling better and I’ll get through this. And I still do feel hopeful in that way. I’ve just had a lot of moments in the last couple days where I’m still in disbelief that this is my reality.

It’s been 5 weeks since my surgery. I’ve adjusted to living with one breast, but I am not at all used to only having one breast. It still catches me off guard sometimes when I take my bra off, or when one of the girls lay their head on me and it’s right on my ribs.

It seems like some people are confused about what’s so distressing about losing a breast (and I know it isn’t distressing for everyone.) For me, it’s not about my femininity or my sexuality. I’m still me, thankfully. It’s just that a whole part of my body that I’ve had for 20 ish years (saying I had boobs in my late teens may be a stretch) is gone. How long would it take for your pinky to be gone before you stopped noticing and missing it? Or your belly button?

Along with those feelings of disbelief are the ones where I can’t believe I’m going through chemo. I’ve been anti-chemo my whole life. I know that isn’t fair since chemo has saved many lives, but that’s how I felt. I used to think there was always another way. How could poisoning yourself really be the best option? And while we’re at it, I was so opposed to hormone therapy. Why would I want to cause hot flashes and weight gain and decreased sex drive? (I have kids for that!) When I was presented with these options in the fall, I couldn’t even consider them. Yet somehow, I’ve come to a point in my health, where these are the best options for me.

So this week, while I languished in the (thankfully mild) effects of chemo, there were a lot of “what is going on and how did I end up here?” thoughts. How does my best life involve me with one breast and chemo coursing through my veins? But it does.

Then today, I was really tired. The girls stayed up late and woke up early. I couldn’t go back to sleep. I was impatient and frustrated. I’m functioning like half a mother when I want to be 100%. There are some behavior things that feel like they need to be handled better, but I don’t have the energy, so I just get mad. I get mad that Jonathan isn’t doing everything and mad that he has to do everything.

Then I realize that this is going to be our normal for a good long while. That’s hard. Because otherwise, I was sick earlier this week and I’m getting better now. But I’m not. I’m going to go through this over and over. And that makes me really sad.

My little sister left with all of the girls, and it was time to rest. That’s when I had another unpleasant realization – I hate resting. And this is a week after our church retreat where we focused on rest and quiet. On Sabbath. I’m so bad at it. I’d rather be doing stuff. Getting shit done. I’m not made to sit around in bed all day. I mean, it doesn’t help that I can’t really focus on reading or doing anything mentally stimulating right now.

But I have to learn to. As Jonathan reminded me, resting is my job right now. I know that sounds heavenly for so many of us, but it isn’t when it’s forced on me. One of my cousins told me the other day, “Think of all the times you wished you could get more sleep…now is your chance. Let your body put its energy towards fighting & healing. There will be better days to come.”

My older sister asked me today what lazy/productive activities I liked, and suggested that if I could find something to do while resting, I might enjoy it more. So far, I thought of online shopping, but after viewing my post-surgery haul, that isn’t sustainable. (I may have bought a new bed and some art.) I actually went through my closet, did my style school homework, and did some stuff on the computer which was chill but satisfying. I do need to reframe my thinking about the next few months. Recognize that we are in this for a good chunk of time so I need to figure out how to make it work. Figure out that balance between wishing it away and missing out on life.

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I cut my hair this morning. All my haircuts are the most anticlimactic pre-chemo buzzes. They’re just haircuts. I wonder if this will be the last one or if I’ll cut it again next week. I heard it starts falling out after the second treatment, and since I usually cut it once a week, I should have at least one more cut between now and then.

The rest of me feels pretty normal. My mouth feels funny sometimes, but I’ve mostly been able to eat all my meals and enjoy them. I’m still drinking coffee. I’ve been swishing coconut oil for 10 minutes at a time several days, which is supposed to help prevent/heal mouth sores. (Why is it called oil pulling??)

So here we are. One week down, and I’m not counting how many to go.

 

 

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