Hair Loss and Lactose Intolerance and Emotions

 CW: more cancer stuff, also Lucas, also sadness

The last time I was in to Northstar for my growth factor injection, I asked if I would have to get a shot after every infusion (I hate shots, so I was hoping I might not have to have 16 of them). After the first 4 infusions (the first 8 weeks), I will be switching to a different type of chemo. She indicated that I will not be getting growth factor shots during those last 12 weeks of chemo because that type won't render me as immune compromised (the first 4 infusions are two types together, the last 12 weeks are just one). Not only that, but the nausea isn't expected to be as bad during those weekly infusions. The good news is I should feel better and be less at risk for other infections and not have to get shots. The bad news is, well, weekly infusions for 12 weeks, but we already know that.

I was smiling because I found a bandana that wasn't too hot, but also nearly halfway through the bad stuff!

What that means to me is that tomorrow basically marks the halfway point for the "bad" chemo. The bad chemo is the every other week infusion of Adriamycin and Cytoxan with the growth factor shot the next day. I'm happy to celebrate a halfway point, as the aftermath of the last infusion was kinda rough. On the day of the infusion or maybe the day after, my hair started falling out in clumps and the nausea seemed to last longer than the first time around. I was feeling okay on Thursday, the day after my infusion, but for the next few days I was nauseated more or less constantly (they say the antinausea medicine from the IV wears of on Friday). I also found the thought of food to be disgusting for a longer period than last time.

My husband hanging out with me for the second infusion

Emotions

Unfortunately, this was also an emotionally difficult time. My nephew, who is not yet 3 started suffering some scary symptoms around Christmas and was finally diagnosed with his own cancer. Early suggestions were that it is operable and won't require him to go through the kind of garbage I'm doing now, but his family is meeting with the cancer team tomorrow, so we're still in the yucky unknown time. Obviously the whole family is having a difficult time and we'd like to publicly ask cancer to take a f-ing hike and leave us all alone. My brother and his wife are meeting with their own cancer care team tomorrow, so all my fingers and toes are crossed for them. Prayers gladly accepted if that's your thing.

Like I said, it's been a hard two weeks and I wasn't sure I wanted to chronicle this crappy time, but I do sometimes feel better letting it out than keeping it in. Words on the page sometimes lose their power to hurt or the hopeful/positive ones gain some solidity and comfort, at least for me. I'm also considering the possibility that I might want to reflect on this week later in the process, though I'm not sure that will be true.

Hair Loss

I was surprised by the things that knocked me for a loop this week and surprised by my reaction, really.  When my hair started falling out, I yelled in surprise, even though it happened exactly when and exactly as I was told it would. The type of chemo I'm on causes total or near total hair loss in 7-21 days after starting, according to my Breast Cancer Treatment Handbook and other text sources. My doctors have all been clear that I'd lose my hair, though they didn't specify exactly when. I was in the shower exactly 2 weeks after starting chemo when I ran my hands through my hair and they came away absolutely covered in hair. Losing my hair in the shower in this way is exactly how a fellow breast cancer patient described it during my first infusion. I shouldn't have been surprised, but somehow pulling great clumps of my own hair out wasn't something that I was able to prepare for.

lol, I've got gaps in my hair

That day I was in a bit of a hurry to shower before going to an appointment, so I finished my shower as quick as I could, cleaned up the hair out of the drain, and headed out. I took a few photos of my hair loss, both in the drain and on my head. I'm not sure you could tell from the front, but the sides and back seems pretty wild to me. At this point, though I was surprised, I also found it funny to observe the changes. (I was not feeling nausea on this day).

lol, that's a lot of hair (at least for someone with a pixie cut)

The next day, expecting the same thing, I left myself more time to shower. And the hair just kept coming out in clumps in my hands. In fact, I became sort of fascinated and couldn't figure out how to stop. I'd run my hands gently through my hair and they'd come out covered in hair. I'd wash the hair off my hands and my shoulders and repeat the process. I finally realized that I'd been in the shower for quite a long time and there was going to be no logical end to the process of hair coming out, so I had to just get the hair off me and stop.

a bald patch in the back, as predicted by Nialle

At this point, when I looked in the mirror, I felt I looked like a halloween decoration. My hair was exceedingly thin, but not gone, which just looked odd. The color was wrong because what was mostly visible was head. I looked sickly, I thought. I was already feeling nauseated from the chemo anyway, and looking at my hair or thinking about my hair loss made me feel worse. This was really not what I had expected as my reaction to the hair loss. The day before, when I wasn't feeling sick, I thought it was kind of funny and mostly interesting. Seeing it while I wasn't feeling so good, or seeing it farther along made me feel worse. I did not take a picture on this day and tried not to take off my hat.

Over the course of the day and the next morning, I discovered that the hair I still had was also really uncomfortable. I'm not sure if it hurt or if it was just sensitive. The feeling all over the top of my head was like when you've had your hair in a tight ponytail all day and then taken it down; the hair feels like it wants to fall in the wrong direction. I was also feeling sick all day and worried about my nephew and worried about myself. I didn't want to look at myself and I didn't want to think about more hair coming out in the shower.

I eventually asked my family to shave my head. I figured this way I'd be taking charge of something (since everything else seemed out of my control). I felt like I could deal with no hair better than some if it were my decision. It would cut my shower time down significantly (because I wouldn't have to pull it out and then work to get it off my hands and shoulders), and I wouldn't have to keep washing my hats and clothes because they were covered in the hair that fell out during the rest of the day and night.

the inside of my hat on the second day

The shaving was odd, as my head or my hair was so sensitive. It didn't hurt, but it did feel kind of icky (also, I felt icky anyway). It also took forever for some reason, probably because my daughter was trying not to hurt me. After she was done I still couldn't look at myself for another day. In a couple days I was comfortable enough to take a picture, now I'm comfortable enough to walk around without a hat until I get cold. I bought several "chemo caps" in preparation for the hair loss. I'm glad I did because I was able to wear them to catch the extra hair, but also because they are more comfortable for sleeping in than a winter hat.

Now that I've been bald(ish) for over a week, I find that I need to alternate between the cotton or bamboo caps, winter hats, thin cotton bandanas, and nothing because my head keeps changing temperature. My working hypothesis is that hair is a better temperature regulating feature than fabric of any kind. Hopefully I'll get mine back eventually. 

you can tell by my face that I wasn't quite ready for this look

I also discovered that walking outside with a winter hat on isn't sufficient. I didn't really think about the fact that my warmest winter hat is lined around the ears and the bottom edge, but the top is unlined crochet with holes. When I wore it outside for a moment, I really felt the chill up top. Stocking caps also aren't quite sufficient for outside, but they can be good when I'm feeling really cold inside. My new normal is to wear one of the specially bought chemo caps or a scarf under my regular winter hat when I go for a walk.

Lactose Intolerance

My other discovery of this round came when I was finally starting to get over the nausea. Our neighbor brought us a few slices of apple pie right when I was starting to feel like I could eat again. I've never been a huge fan of fruit pie, but this one looked amazing (and was). I heated up my slice, added a small scoop of ice cream, and enjoyed. It was really, really great. 

I only added a small scoop of ice cream because I was already beginning to suspect that too much dairy wouldn't agree with me. After the first round of chemo, I'd tried a milkshake, which likewise tasted great but later made me feel sick. Thinking that yogurt might be better, a few days later I tried a smoothie with similar results. But cheese had been fine, so I figured it was worth a shot with a small amount of ice cream.

Apparently one can develop lactose intolerance during chemo (hopefully temporary). Milk, ice cream or frozen yogurt, and soft cheeses have more lactose than hard cheeses. The internet says that yogurt is ok, but I'm too scared to check. My stomach hurt for 2 days after the ice cream. When my daughter made mozarella sticks last night, I opted for one where all the cheese had fallen out (disappointing). I also bought some lactose free milk for my tea and discovered that lactose must be an important element of flavor. I've been just drinking my tea black since then. 

The Chemo/Nausea/Sneezing/Energy Cycle

As you can probably tell by the fact that I've scraped myself up off the couch and am writing, I'm feeling a lot better. This weekend, I think, I started getting back to myself. The pattern I'm starting to see is that the day of and maybe the day after chemo I'm fine. Then I feel mild, but constant nausea for 2-4 days. This week it was longer, but some of that had to be the ice cream. This week I also had indigestion through the second week. On Saturday my energy level increased (it was earlier the round before) and I started sneezing and having a constantly runny nose, which is much improved today. The first time around the sneezing started a bit later and stopped on my infusion day. Today I've been feeling good, except that my bones ache periodically (the growth factor).

Tomorrow I will be going in for my blood work, followed by the infusion on Wednesday. I'm hoping that I might be able to talk to my doctor about the nausea and the indigestion, but surely at least 2 days of unpleasantness will be helped by avoiding dairy. I've updated my information on Meal Train so that those lovely people bringing us food can also help me avoid lactose and focus on what I've been able to eat (soup, salad, and bread, mostly).

More Emotions

I'm not sure what to do to avoid the emotional pits and drops this time around. The hair surprised me, as did my nephew's situation, of course. I might also ban myself from reading about cancer for a while. I read two books (well, I read the relevant sections of two books) on cancer this weekend. The first, about breast cancer, made me feel a bit better, especially how she talked about diet and complementary therapies. I also learned that staging doesn't usually happen until after surgery, and I learned a bit more about neoadjuvant (before the surgery) chemo, but the stuff I read about breast cancer spread and recurrence did not make me feel better.

Overall I'd recommend this book, The New Generation Breast Cancer Book by Elisa Port, MD

Then I read a book about cancer more generally. This book, The Cancer Companion, was not focused on breast cancer and had what felt like a lot of emphasis on incurable cancers, recurrence, and palliative care. It made me wonder more than I'd like to about my long-term prognosis. The book talked about how important it is to be clear with your doctor and ask for information on prognosis, but I think the problem has been that they can't guarantee me that I'll be fine. 

Maybe I shouldn't be reading this now

This weekend my daughter got her COVID booster shot and the next morning was feeling very bad and even threw up. I called the ask-a-nurse number and spoke with someone about her symptoms, asking whether I should be concerned. I was pretty sure that these symptoms were within the realm of reasonable responses to the booster, but I wanted to be sure I wasn't underreacting (since our family, lately, has had symptoms turn into real problems). I also wanted to clarify whether I should be tending her because of my immune compromised state. She's fine now and my take away from the conversation was that I was correct in my impulses: she was having a reaction within the realm of normal, including symptoms she'd displayed before. The nausea was maybe amped up by her fear (gee, that doesn't sound like me, at all--sarcasm marker) and she was fine. I was also fine because she wasn't sick, her body was gearing up to be prepared in case she got exposed later, but it was fighting a vaccine not a live infection.

All of this was probable and not alarming, but the ask-a-nurse woman kept asking if she'd suffered a head injury or been in the hospital in the last month. And the nurse wouldn't say to me that I was definately ok taking care of her because she could have coincidentally gotten sick at roughly the same time as she got the vaccine. All logic and timing pointed to this being a reaction to the vaccine, but the nurse couldn't guarantee that was the case.

That kind of thinking, at least in part, plays a role in my doctor's responses so far, I believe. They can't guarantee that I will survive because, not only are we dealing with a probability issue where my chances of not having cancer later aren't 100%, but also I could have an unexpected allergic reaction, or get exposed to something nasty while on chemo, or get hit by a bus, or fall into a sink hole, or suffer some other freak accident that was or wasn't related to my cancer and treatment. 

Evidence that I'm feeling better: I baked today

My understanding of my prognosis is that the doctors are pretty confident that they can remove the tumor and lymph node(s) during surgery. The chemo beforehand may make the tumor smaller and shrink or eliminate some of the lymph node involvement (=less to remove), but I think it's main goal is to "mop up" any tiny bits of cancer that might be somewhere else in my body to prevent spread. From my weekend reading, the neoadjuvant chemo also helps the doctors determine my chances of recurrence after the surgery because they can see how my cancer has reacted to the chemo. I hope this means that they can determine how to help me if my prognosis is bad, though I obviously prefer that they can just tell me my prognosis is good.

the kolachky were opening up so I rolled some of them like croissants

In the happy daytime, I understand the reasoning and the goals and feel confident in my treatment plan. I think that agressive neoadjuvant chemo is a good idea and my doctors are doing what they should be doing. In the happy daytime, when my tummy doesn't hurt, I know that if I can't feel my tumor shrinking it might be because it's early in the chemo process, and/or because it's hard for me to feel if it is shrinking, and/or because the cancer could shrink while leaving funny feeling non-cancer stuff behind, and/or because the goal here isn't necessarily to shrink the tumor, but to "mop up."  

But, oh, in the impatient scary nighttime, there is a lot going on that is just outside my control and makes me worry. It's hard to fight back against unknowns and fears and I'd feel a lot better if the doctors would just say "you will definitely be cancer free by September and you'll also live to 100 along with all your friends and loved ones."  Why won't they just say that?

In the meantime, I'm thinking it's time to return the cancer books, or at least set them aside for a while. I've got this long list of funny books and I think I'll be better off focusing there. On a side note, my daughter is like me on needles and was dreading her booster shot, so when we got to Rite Aid, we started watching "Who's on First." By the time they gave her the shot, she'd forgotten why we were there. Now that's a ringing endorsement of humor and escapism.