Thursday, January 20, 2022

Week 6, Staying Strong

CW: Cancer, but also some ceramics again!


Last week I completed 3 of the first 4 chemo infusions and this week I'm about done with 3 of the first four periods of yucky symptoms. I go in for my last dose of Adriamycin and Cytoxan next Wednesday. This round was the toughest as far as nausea and appetite loss. Instead of feeling basically ok(ish) on Wednesday evening and Thursday, like the last two times, I felt pretty terrible on Wednesday and had to go to bed early. 


I worked out today. Very low or no weights, and no impact, but I broke a sweat and felt good at the end. This was about the first time that I got warm enough during a workout to take off my long sleeves, too (but not quite ready to let the chilly bald head out).

In previous weeks, the day after chemo I felt ok, then Friday, as the IV anti-nausea medicine wore off, I felt worse. This time around I felt bad right away on Thursday and had to take the other kind of nausea medicine. They prescribed me two types of anti-nausea medicine, one that's in the IV and one that isn't.  I can use the one for breakthrough nausea on Wednesday and Thursday then alternate the two starting on Friday.

I took this picture after one of my last workouts before beginning chemo. It's maybe a bit of a morbid before, in preparation for a weaker, less healthy after, but I honestly wanted to document those changes that happen during the process.

My nausea continued through Tuesday this week, and was accompanied by an aching chest and torso. I choose to interpret the soreness and pain as the cancer getting killed in that area. I'm not sure if that's exactly what's happening, but that's what it feels like and being in pain while believing that the treatment is working feels better than being in pain and believing it's because I've been poisoned.

I didn't read anything about cancer this time around. In fact, my notebook has directions telling me that I'm not allowed to read anything more about cancer. Instead my carefully curated book and media diet has been carefully curated to include mostly things that will make me laugh. Lots of people gave me suggestions in the last few weeks and I've been enjoying Derry Girls when I can't work up the energy to read and Terry Pratchett, Pride and Prejudice, and the Eyre Affair when I can. Ironically most of those books are rereads, but I've found that's where my patience is right now. 


So many books! Thanks to Linda, Julie, Heidi, Nialle, Shannon, Terri and Jane, but I've lost track of who sent the one on the far right (it didn't have the sender's name, but I think this person mentioned it in an email or text or FB message way back at the start of this journey).


My friends have also sent me books. I literally have more than half a shelf now of books sent or brought or gift carded by friends in both Washingtons (state and DC) and Iowa. I've also been gifted a puzzle from Spain (because Brooke knows that's the kind of interruptable activity that I can handle right now) cancer hats from Wisconsin and Washington, and ceramic yip yips from Minnesota (I know they aren't really the Martians from Sesame Street, but that's what these creatures by Jennifer A Murphy remind me of). 


My ceramic yip yips and one of several books sent by the lovely and thoughful Julie and Linda


During my infusion last week I listened to a meditation program for cancer patients, but that is soothing and doesn't count as reading about cancer. The meditation helped calm me down quite a lot actually, as I was pretty anxious and worried about this round and my reaction to it (I knew that the side effects were likely to get worse with each round). The thing I really liked about the mediation, which was aimed at breast cancer patients, was that it mentioned how to react to the stupid things people say. Basically, it said we might not know why people make these suggestions, but we don't need to pay attention.

the meditation I used last week

The night before chemo I had worked myself into a borderline freak out about whether the chemo was working, etc. I ended up chatting with my friend Linda who asked some strategic questions that managed to calm me down quite a bit. She asked me what evidence I had for my worries, and when I went to actually list the evidence it dissolved around me. I also took advantage of talking to the social worker when she came around during my infusion and that helped a bit too, but by then I had some evidence to contradict the worries of the day before.

The next day, when I met with the oncologist, she asked if I felt the lump shrinking and I said no, not really. But she felt both the lump in my breast and the lymph node under my arm and said she felt they were shrinking. My knee-jerk reaction was to think that she was just placating me, but she honestly doesn't seem like someone who is overly optisimistic or would say something just to make me feel better. She's a bit brusque. When I first met her she said something to the effect of, you're smart, you've already talked to the SCCA (Seattle Cancer Care Alliance) people, you don't need me to tell you all of it again. I was a bit taken aback, but her plan matched the SCCA plan and straight-forward and efficient seem like good traits for a doctor.


So many books from The Haunted Bookshop in Iowa City by way of Heidi and Nialle!


Anyway, I posted about what my oncologist said on Facebook and presented it as good news (because it is). Here's where my community again comes in to bouy me up. I suggested that she's probably better than me at gauging the size of a lumpy thing inside a squishy thing. My friends Shannon agreed and argued that gauging the size of a lump in a breast is a bit like learning to throw pots; it takes practice. It's a good and helpful comparison. Of course an oncologist is better at judging lump size. I'm better at throwing pots because I practice a lot, but I also don't have an emotional and fear reaction when I'm throwing a pot. I'm guessing my brusque and intelligent oncologist isn't in pain or terrified when she checks the size of my lump, and she's got a lot more practice than I do.

I also got a second bit of information that day that made me feel better and function better through some of the side effects from this round. When I go in for an infusion, the first thing I get is IV steroids and anti-nausea medicine. Then comes the chemo poisons. One nurse gets my port accessed and starts the steroids/nausea medicine, but two nurses have to check the chemo before it gets hooked up. I'm a big fan, by the way, of this approach. The first time my Adriamycin was labeled incorrectly and they had to send it back to the pharmacy. It makes me feel safer knowing there are three people involved in verifying what I'm getting is correct. 

On the advice of a friend, I bought a silk scarf because they said it felt good. It's true, but the added advantage is that my young neighbor thinks I should have more hair so she can style it. This scarf is long enough to style into a very long ponytail. The only trouble is that she didn't leave much on my head, so the first picture I took didn't really show what she was excited about.


Last Wednesday, as they were checking my information and my drugs, the one nurse started saying that what she was looking at on the computer was "way way good."  I asked what she meant and she said that my immune system numbers were "way way good."  Earlier the oncologist had told me my numbers. My white blood cells were up becaues of the growth factor, I am slightly anemic and something else was a bit low. I didn't understand what she was saying except that I was cleared for more chemo. The nurses phrased it in a way that made me feel a lot better about the situation. I'm guessing my numbers are "way way good" in comparsion to other chemo patients, not, like, the general population, but I'll take it. 


My friend Nina brought me this ultra snuggly warm hat. I think she heard me say that I had to wear two outside. This thing is sooo soft on my bald head. It feels great and keeps me very warm.


I feel that I can interpret "way way good" immune system numbers as a sign that I'm doing well, but more specifically, I can choose to interpret that as meaning that I'm doing what I should be doing. I'm not teaching this quarter, which I think is good, as I'm feeling sick for 5 days in a row, but it also means that I've got more time to myself on the days when I am feeling ok. As I like to keep busy and have some kind of structure to my days, I've been assigning myself the work of eating, drinking, walking, and generally trying to take care of myself (although the baseline for that is different than it used to be). 

I've been keeping a log of symptoms in this Personal Health Tracker for Cancer patients that showed up in our Little Free Library. (I'm convinced someone who knew I was dealing with cancer left it specifically for me. Thanks unknown person!) I've also been tracking other kinds of things I'm doing for my health in my own notebook. My motivation is that I like checklists, but also I figured I might be able to kind of gauge whether things I've been doing are related to symptoms or how I'm feeling. I'm also supposed to drink 3 liters of water each day and as that's a lot, it helps to write it down. So far the main thing I've learned is that on the days when I feel particularly bad, I just don't write anything down. 

the tracker that was left in our little free library

The things I think I'm doing for my heath are drinking enough, eating (maybe not enough, but better than if I didn't have eating as a goal), doing some kind of meditation, yoga, walking or exercise (though this has been surprisingly difficult for someone who is used to walking to and from work and working out pretty before breakfast most days). I also figure that reading for pleasure and trying to do something fun or creative are also helpful.

The exercise has been the biggest surprise for me. I remember when I was newly pregnant and was very frustrated that I couldn't keep up with others on a walk or a hike. I honestly didn't feel that being not hugely pregnant should make me get winded so fast.  I feel similarly on the chemo. I'm 3 infusions in to a 16 infusion cycle (or 6 weeks into a 20 week ordeal) and I already am finding it challenging to go for a short walk around Davis. A half hour yoga session requires me to take breaks and I'm basically never getting 10,000 steps, though before the chemo my daily goal was 12,000 and I often got much more. Obviously the freezing fog and unpleasantly chilly weather (and ice, and snow) is impacting my walking, but I'm still frustrated aboutmy lack of walking endurance. 

my symptoms tracker in the Write Track book

The main identifiable symptom is nausea, but that seems to manifest as both nausea and indigestion (even when I haven't eaten much). I'm still exploring the possibility that small amounts of dairy are at fault for some of the indigestion.  The ice cream last time around knocked me out for two days of severe indigestion. Since then I've been avoiding all milk and ice cream, but I'd still been using a bit of butter and small amounts of cheddar cheese until yesterday when I realized that the previous days' symptoms (indigestion, sore back) were pretty similar to the ice cream symptoms. I decided not to have any more cheese, and though I felt better yesterday, I was also on schedule to feel better, so it's hard to know just yet what's the cause. Also a lot of food I usually eat has dairy in it!

I am also waking up with headaches. I take medication for migraines, which used to interrupt my life regularly. I've been pretty good with them for a number of years because I know my triggers (stress, too much or too little caffeine, lack of sleep, etc) and avoid them. Waking up with a headache isn't all that unusual for me in times of stress, but I feel frustrated because I don't think I'm that stressed except for the, y'know, general having-cancer stress. And maybe a bit of my-nephew-has-cancer stress and I suppose when I can't get through my breakfast I don't finish my tea (not enough caffeine) and when I don't feel good my sleep is a bit interrupted.

I also have soreness all over for days after the chemo. This time I know it lasted through Saturday, but Sunday and Monday were the days when my discomfort or my mood prevented me from writing anything down until after the fact. I also have bone pain. This comes from the growth factor. The first round it started exactly a week after the chemo. This time I felt like it started earlier, but before the pain in my back happened both as a symptom of eating ice cream (lactose) and from the growth factor, so it's a little hard to tell whether the growth factor or the cheese got me on Tuesday. The bone pain was pretty strong yesterday and was not accompanied by indigestion, so at least that's a known cause. Somehow it bothers me less knowing that the growth factor is responsible for that pain.

my own water/medicine/activity tracker

I feel like my symptoms are both minor and sucky. I often feel that writing here helps me think through things or see them in a way I haven't before. Kind of like when I was chatting with Linda and she asked me some questions and my answers made me realize I was feeling differently than the evidence warranted. So I've been feeling like I'm being pretty unreasonably whiny about minor symptoms like pain and nausea that are either eliminated or severely reduced when I take medicine for them. And the other symptoms of getting winded, feeling indigestion, and generally feeling low all feel like things that should be within my control. Maybe if I had walked more when I was feeling really bad I would be able to walk more now. I can vaguely recognize that maybe I'm being harder on myself than warranted, but writing out what I'm feeling in words (not just a chart) helps me gauge the size of the issue. I've got four paragraphs of symptoms. Maybe that's not nothing. Maybe I should be a little gentler on myself.

Ok, but it wasn't all moaning and feeling awful this week. I also managed to find a narrow lever of motivation, wedge it up onto a tiny little fulcrum of energy, and slide myself into my studio this week. I wasn't sure I was up for throwing (wedging, lifting, cleaning, pushing, all in a studio not connected to central heat, and then needing to trim the next day seemed like too much commitment). 

plates waiting to be fired

Instead I inched my way into the studio with little tasks. The first day I cleaned bats. I'd thrown some plates back in October or November when I thought I could make Christmas gifts this year, but I'd never gotten around to cleaning up. The next day I prepped some too dry clay for the pugmill. A few days later, I pugged some clay and used just a bit of it to start a couple of small sculptures. Turning on the space heater earlier in the day and knowing my clay is waiting has gotten me into the studio most days this week. And making with clay just makes me feel better. It's not exactly exercise, but it does feel like medicine. It feels like being me. I didn't set myself much as a goal other than spending some time on these. I figure at this scale with two pieces, I have time to finish the building and work on the surfaces before I go in for my next chemo. I'm guessing I won't want to work on them after that. 

an awkward vase (in progress) based on a sketch from years ago

Getting into the studio provides a mental and physical change of pace to my day and gives me something pleasant to do. It also gives me time to listen to an audiobook without getting distracted and takes my mind away from thinking about cancer or chemo. Of course it helps that the orange cat likes to come in and jump up on the table when I'm working. 

A kind-of cactus I wanted to try again after the first one broke


I was scaring myself again this week, so a change of activity was useful. My friend started chemo with the type I will be having for the last 12 weeks. Her dose is higher than mine will be, but she had a really tough week and that's been scaring me a bit. I was hoping that my next dose will be the worst of the whole 16 as that's what one of the nurses suggested. My next one is the last of the Adriamycin and Cytoxan together. After that it is 12 weeks of Taxol. 

When she was giving me my growth factor shot, the nurse said that I wouldn't need those shots during Taxol because it will be less hard on my immune system. Actually, she said something along the lines of "woah, you're on the tough one now." She also indicated that the nausea won't be as bad on the Taxol. 

I started to work on the final glaze layer for this guy, but there's something wrong with how the second layer of underglaze stuck, so I'm not sure I want to mess with it. Clay is more fun than underglaze.



But my friend's experience was scaring me, so I called my other friend whose done Adriamycin/Cytoxan and Taxol before. She calls the Adriamycin the "dreaded red" and indicated it was pretty rough for her. She actually had to check whether she'd done Taxol and then indicated it wasn't as bad as the A/C. That matches what the nurse and doctor said, but it's nice to have confirmation from someone whose been there.  

It was a balm to talk to her, and not just because she had good news about Taxol. There's something about talking with someone who has had the same experience or who is having the same experience that can be helpful, but especially so if they have insight about how they think about the whole process. Her advice was to try to focus on one day at a time and not try to think too far ahead. I like to be in control, have a long-term plan, and know what's coming up, which cancer and chemo don't really allow for. Sometimes talking with someone who has also struggled with the changes that cancer and chemo forces can feel both validating and refreshing.

I talked to my brother this afternoon, too, and we agreed that maybe it's not important to have the "right mindset" but the right mindset for you. Some of the overly cheerful or everything happens for a reason stuff makes me want to punch, but I appreciate that it works for others. The way I like to think about the pain in my chest as evidence of the battle going on inside might not work for everyone, but it works for me. Realizing I've been doing this for 6 weeks already (wow) makes me feel like I've accomplished something and thinking about my strong body and "way way good" immune system (so far) make me feel like I do have some control (and I don't need to hear if that's likely to change or whatever).

Monday, January 10, 2022

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.