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!