Tuesday’s MRI
A couple weeks ago, I had a follow-up visit with my radiation oncologist. I was supposed to see her earlier this year, but she chose to delay it in order to make sure I wasn’t being seen and scanned by everyone all at once and then no one looking at me for months. I appreciate that and it’s one reason I chose to stay at Winship for radiation. It’s so nice to have all my doctors in one building.
When I saw her, she was thrilled with how everything looked. Said I didn’t even look like I’d had radiation (which I don’t.) She said that the notes indicated I should have a left breast MRI, so it was scheduled. I didn’t understand why I needed it since I’ve had such frequent CT scans, but she explained that it’s because breast tissue is so dense and the MRI provides a better view.
I realized earlier this week how little anxiety I had about this scan as opposed to my usual scans. I figured out that it’s because cancer in my other breast (which is the only thing this scan is looking at) is very low in my concerns. I obviously don’t want any more cancer, but metastasis (breast cancer showing up in another part of my body) is my greatest fear. I can always chop off my other breast if I have to.
My scan was yesterday. I did have some negative feelings going into it, but it was because I was remembering my first MRI. It was in July 2017 and was my first taste of “you’re dealing with something serious.” Not only was it the most intense evaluation I’d had up to that point (I’d already had ultrasound and mammogram), but because of issues with my vein, it was really unpleasant.
I remember going to the hospital and not thinking much of it. I didn’t ask anyone to go with me because I didn’t think it would be a big deal. I had to go in a room and take my clothes and jewelry off, and even had to remove my nose ring. So I took off everything familiar and comforting and walked down cold halls to a room that I know is basically a cement block. I sat on the edge of the machine and they started to insert my IV. She got the needle in, but no blood came out. She says she hit the valve and tries to move it a little bit to get past it. Without reliving the whole traumatic event, she kept moving it around, having me shift my body, and doing different things – even getting someone to help her – to try to get my blood going.
Since then I have learned to speak up for myself. To tell them to take it out and try again. But I didn’t know this at the time. I just let her try and try, all the while I felt worse. I eventually started to cry, and I think that might be when she took the needle out and tried again. I don’t remember, but I remember leaving that scan feeling sad and awful.
Yesterday, I knew it wouldn’t be the same. I’d never let someone wiggle in my vein like that, but I don’t think MRIs are ever pleasant. And unfortunately, the nurse hit a nerve in my arm and I immediately felt pain in my wrist. She was very kind and immediately stopped. She apologized and brought me tissues because I started crying.
The crying doesn’t make sense. It didn’t hurt that bad. I think it’s just the reminder that “yeah, it’s this cancer crap still.” The cold hospitals. The stripping down in weird little closet rooms. People jabbing needles into my body. My body not cooperating. Being strapped into a machine and then closed in a room.
The rest of the scan was fine. I mean, as fine as 25 minutes spent absolutely motionless flat on your face with your breast hanging down in a hole on the machine can be. And wearing ear plugs, because it sounds like you’re in a tile shower and someone is jackhammering the ceiling. They tell you that once the contrast goes in, you can’t move or they have to stop the test and you do it another day. It’s “the money shot”. No pressure.
The man who did the scan would talk to me over the speaker telling me how long each section would be. That was helpful. They were anywhere from 45 seconds to 6 minutes. I would count the seconds. I recited Psalm 23, the Lord’s Prayer, the Song of Moses.
“You prepare a table before me in the presence of my enemies.” Alright, God; where’s the table? No epiphanies or revelations, but I made it through. Didn’t ruin the money shot.
I don’t like these scans, but they are part of my life. I don’t know if/when I’ll have another, but I will make a plan for the next one that involves ultra comforting things before and after. Yesterday, I had Christmas errands to do, but I did squeeze in a trip to the thrift store, which is always a treat. I usually feel the need to rush back and help with the kids, but I took my time and found three pretty pieces of clothing, some interesting books, and a few Christmas items.
* You are here
It’s been over a year since I posted on here. Compared to last year, this one has been uneventful, and for that I am grateful. After what feels like a long, meandering, sometimes difficult journey, this is where I am with my health.
Recently, I spent the whole day working in the yard. I cleared weeds, dug five big holes, transplanted my blueberry plants, covered the area with planting soil that we bought, and spread mulch over the whole thing.
This may not seem health related, but it is. Last year at the same time, I wanted to work in the yard, but I couldn’t. I was so tired. So weak. I was about 1/3 of the way through radiation, and it was already wearing on me.
I finished radiation right before Thanksgiving, and then went straight into holiday mode. I remember the time between finishing radiation and the beginning of 2019 as my cancer vacation. I may have had a doctor visit or two, but cancer definitely moved to the back burner.
In January, I went back to my oncologist and began the next phase, which I guess could be called cancer prevention. It is two-fold. The first aspect is hormonal, since I had a hormone positive cancer. I get a shot every month that suppresses my ovaries and puts me in menopause. In conjunction with that, I take letrozole (hormone blocker) every day. At this point, I don’t remember why we did the menopause route instead of just taking Tamoxifen like most younger patients do, but I’m assuming it was to get that additional reduction of estrogen.
The second and most intense aspect of my treatment is a drug called Ibrance. This drug interferes with the way cancer cells reproduce. It is typically used by women who have Stage 4 breast cancer. This is the kitchen sink part of my “throw everything at it” treatment right now. I’m grateful that this option is available to me. There are other women in my situation who do not have access to this drug. This two-pronged approach is mimicking a trial that was done recently that Dr. Z believes will be successful for women like me.
For two drugs with shocking lists of side effects, it’s been an uneventful year. I’m healthy. I’m as active as I want to be. None of the things I could complain about have kept me from living a full, happy life.
Since I began these drugs, I’ve had multiple clear scans. I’ve had some spots in my lung that we were watching, but have always been attributed to radiation scarring. My last scan showed reduction in these spots, and no activity elsewhere, which means that I will be able to finish Ibrance after a year.
(I started this over a month ago. I don’t know why it’s so hard to finish. Maybe it’s because I’m trying to sum up a year of my health life in a few paragraphs. Maybe because I’m too distracted. Either way, it really frustrates me.)
As of today, I have 10 pills left. Without even planning it this way, I’ll finish Ibrance on Christmas Eve. I couldn’t ask for a better Christmas present.
post-chemo, pre-radiation
Today, I am six weeks post-chemo. I thought I’d be starting radiation today, but I won’t start until Wednesday. I had my scan to get set up for radiation almost two weeks ago. They told me it would take 10 days to 2 weeks to get everything ready, but when I hadn’t heard anything this morning on day 13, I started harassing them.
Thankfully, my plan was ready by the time I got someone on the phone around noon. It’s not like I just can’t wait to start radiation, but it was really hard coming back from vacation Saturday and not knowing what was going on. I’ve had the month of October and part of November just kind of blocked off, but I like to have a plan. I also know that the sooner I start, the sooner I’m done. And I want to be done.
Back to the post-chemo stuff, the hair on my head is making a significant comeback. I cut it about every week or so just to keep it all coming in the same length, but it’s noticeable from a distance. My eyelashes and eyebrows, on the other hand, have almost completely left the scene. It was hard being at the beach last week where I couldn’t keep the eye liner and brow penciling on, and I just had to deal with my bare cancer face.
Dear Gulf of Mexico, you can wash my makeup off any time you want.
My body hair is coming back in tiny, wispy bits. We were joking that it’s like I’m in middle school again. I have to keep checking my armpits because I don’t want to be that kid that one day realizes they have a full armpit full of hair and didn’t even know it. (There’s nothing wrong with it, but it’s not my personal preference.)
I mentioned before that I haven’t had body odor throughout chemo either. It was a strange milestone when last week, for the first time in months, I noticed that I smelled a little. It doesn’t help that all my usual “take a shower” indicators are gone – dirty hair, smelly pits, body hair. I’m not sure if the bacteria that causes us to smell is finally coming back, or if, as my mom suggested, my sweat is becoming less toxic. Who knows?
My fingernails, which are usually really strong and smooth, continue to be weak and have flattened out and, if I didn’t keep them super short, would curve downward over the end of my finger. It’s hard to describe, but they’re just kind of weird right now.I look forward to getting my old nails back too.
I feel very “meh” about radiation. From what I hear, it’s nothing compared to chemo, but based on my restlessness yesterday, there must be some underlying anxiety.
I also have another CT scan coming up. Sometime late last week, I realized that it was within two weeks. (It had seemed so far off when I just thought about it being in October.) I could feel a little bit of anxiety rising just making that realization, so I’ve started asking people to pray specifically for that. Last October, I had a clean PET scan, and in February I had cancer again. Any attempts I make at elaborating on my anxiety just start me down rabbit holes of fear, so I’ll stop. I obviously want a clean scan, but I also want to be able to live the next couple weeks in peace and not be worrying.
I was thinking recently how hard it is for me to embrace my last clean scan. Why can’t I say “Until further notice, I don’t have cancer.” Instead I feel like, “The last scan was good, but we’ll see.” I consider myself a positive, optimistic person, so what gives? Logically, I’m in a very different situation than I was last fall. I’ve removed my misbehaving breast and done much more extensive and aggressive treatment. But even know that isn’t helping. I’m not living in a place of fear, but I do feel like my joy in my current situation isn’t what it could be. I’d appreciate any thoughts you may have.
Oh yeah. Details. Wednesday I will have what seems like a trial run for radiation. Thursday will be my first actual treatment. I’ll got Monday-Friday for at least 25 but possibly up to 32 treatments. I’ve been wearing 3 cross marks on my chest since my initial scan. They put a very thin tape over them, but after a day or so at the beach, I had to put some thicker tape over them to keep them in place. Needless to say, the tape is super ratty and itchy now, and I can’t wait to get some new stuff on.
4 weeks post-chemo
It’s been four weeks since I had my last chemo treatment. I feel good. Almost normal, whatever that means (I still have three kids.) After this last treatment, I had a surprising amount of pain in my mouth. It felt like I had eaten something really acidic and had burned the inside of my mouth. It was really painful for a couple weeks, and I still have some lingering pain. At this point, though, I’m wondering if it is still chemo related or if it’s something else. I’m also still having some intestinal issues, but other than that, I feel decent.
The week of my that treatment was the last week that my sister Joy and her family were here from China, and all my siblings were in town for some of that week. I think because of that, the end of chemo kind of slid by. Don’t get me wrong – we were all happy and celebrated, but there were a lot of other things going on.
It’s also a strange thing in that while we were all happy chemo was done and it was great to ring the bell, I knew I still had at least a couple weeks of feeling bad before this part was really, really over. At my last appointment, Dr. Z gave me time frames ranging from 5 weeks to 6 months for different effects to subside. (I can’t remember what was at 5 weeks, but neuropathy was up to 6 months.) So August 20 was the beginning of the end instead of the absolute end.
In the last few days, I’ve been thinking about how I’ve just moved on to the next thing and wondering how I can more properly appreciate and recognize the end of chemo. It’s crazy how when you start something, it feels like it’s going to last forever. Chemo is going to take four months! We’ll be into the next school year before I’m done. And then one days I realize it’s been over for almost a month. I’m not really sure exactly what I’m looking for here. Probably to be more grateful. You know how when we are in pain we cry and beg and pray for the pain to be gone, and then when it is gone, we practically forget about the whole thing? Or is that just me?
I saw Dr. Z again today. Routine visit to make sure everything was normal. It took two nurses to get my blood. There wasn’t any blood return in my port so after a lot of trying, she went to my arm. Couldn’t get any blood there even after a disturbing and distressing amount of wiggling and prodding with the needle. She called another nurse who started on my wrist while she went back to my port, and they both got blood at the same time. Gah… It was awful.
Thankfully, he said all my blood work looks good. I’ll see him again in 6 weeks and have a CT scan in mid-October. He seemed apologetic for the frequency of scans, but said in light of the nature of my cancer, he wanted to do that. I am very grateful for the scans though. I don’t know how long it will be before I really take comfort in a clean scan.
I have my appointment tomorrow where I’ll get set up for radiation. I’m hoping I will start October 1. That was the date the doctor and I talked about in June since we have fall break next week and wanted to go out of town. She said as long as I had my scans beforehand, it would be fine. The plan is to do radiation 5 days a week for 6 weeks. Because of the lymph node involvement, they will not only radiate my breast area, but will also do the lymph nodes under my breast bone and collar bone and in my armpit. The main side effect I hear about is exhaustion with skin problems being right behind. It’s like getting a slight sunburn every day, but some people get really bad burns. I hope that I’ll respond to radiation as well as I did to chemo, but I’m not going to worry about it right now.
That’s for tomorrow and next month. Today, I am grateful for air conditioning and a husband who gets carried away when there’s a wine sale. I’m grateful that I can take all three girls into the grocery store and not feel insane at the end of it. I’m grateful that I never lost my appetite or struggled with nausea over the last many months and will do my best to see my too-small clothes as the blessed result of that. I’m grateful for the okra plants and beautiful zinnias that my parents planted months ago and are still making our mouths and eyes happy.
Round 7: the doldrums of chemo
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
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.
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.
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
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
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
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
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.
