8/24/22: Cancerversary

Actually, the 3-year anniversary of my double mastectomy was yesterday. Maybe it's kind of a good thing that I forgot and didn't realize the significance of the date until today, because it implies that the experience marked by the date is not occupying a huge place in my psyche?

Interestingly, to me, it feels like I've been managing my cancer treatment forever, so "3 years" sounds like a surprisingly short period of time. On the other hand, when I focus on just those words - "3 years" - then it strikes me as a long time. It's weird how time, something that is objectively measured, can feel so subjective. 

I also realized I haven't posted any photos in a while, so here are a few new ones.

This is me now.

I never did go back to wearing contacts after stopping during chemo, so I wear glasses all the time now.

I haven't cut my hair since I shaved it. I'm thrilled that it's grown back as thick and as black as before, especially because I know that for some people, post-chemo hair can grow back white or gray, or with a different texture. The top is still a bit thinner than it used to be, but it's the kind of thing that maybe only I can notice, so I try not to let it detract from the gratitude of having a full head of hair again.  

I like that it's long enough to help camouflage my flatness, but truth be told, probably 98% of the time my hair is up in a messy bun because of the heat of hot flashes. Since getting my ovaries out, the hot flashes have been stronger and more frequent. It finally dawned on me that maybe this is why so many women cut their hair short as they get older! 

Anyway, here are a couple photos of my port scar. 

I can't remember exactly when I stopped using the scar cream every night, but for months now I've been applying it maybe 3 or 4 times a week. At this point, I figure I'll just finish the tube and be done with it. When I first took these photos, I didn't think the scar looked any better, but when I compared them to my last photos from over a year ago, it does look better. Maybe the scar cream helped, or maybe it's just the passage of time. Who knows!

7/3/21: (1.5 Years Post-Chemo) Hair Update

I can't believe it's been 1.5 years since I finished chemo. It feels much closer. I am finally now - 1.5 years later - starting to feel like "myself". 

A huge part of that is because my hair continues to grow in. At first I was worried that it was coming in too thin, because I still had a "bald line" in the back similar to when I was losing my hair during chemo. Thankfully, as my hair gets longer, it's also been coming in thicker.

3/18/21: Lupron + Medical Oncology NP Appointment

I wore a KF94 mask again today, and they didn't bother giving me a new surgical mask.

I was originally scheduled to see my oncologist, but at some point the online patient portal showed that the appointment was switched to the NP. I don't know why, and I don't really mind. I like my NP a lot now.

I had expected to get my blood drawn today, and I'm curious to know what my estradiol number is. But my NP said my oncologist decided to put it off for another month, so that my body will have had 3 months to adjust to Tamoxifen before we look at my hormone numbers again.

First we went over all my side effects. 

I seem to have a runny nose all the time now. Sometimes I wonder if I might be developing seasonal allergies, but it's also listed as a side effect of Tamoxifen, so who knows. I keep meaning to try some seasonal allergy medication, just to see if it helps, but then I never quite feel like the runny nose is that bad, I feel like I can put up with it. Interestingly, my NP asked if my nose hairs have all grown back! It's true that I lost all my nose hairs during chemo, and whatever hair that is growing back now, including on my legs and underarms, has grown back much thinner. So, maybe part of the problem is that I just don't have enough nose hairs anymore. 

My hair is growing in thin, presumably because of the Tamoxifen. If I don't shower for a couple days, and my hair gets a little matted, my part becomes pronounced in the back. Not quite as bad as in this photo, but similar, and definitely evident. The friendly medical assistant I saw today was very positive and encouraging about my hair growing back, but I told her I still just don't feel like myself, and I'm impatient for my hair to grow longer. 

The first three fingers of both hands continue to be very mildly numb and tingly. This persistent neuropathy doesn't interfere with my activities of daily living at all, but I can feel the numbness and tingliness when I tap my thumb and fingers together. 

I still feel some stiffness in my fingers, particularly in the morning when waking up, but it's not nearly as severe as it was before. My legs are much improved, too, and they no longer feel stiff like they did when I was on exemestane. I first noticed the difference in the kitchen; in the time it took to cook dinner, my legs used to stiffen up so that sitting down to eat felt like a huge relief. Thankfully, that's no longer the case. Going up and down the stairs feels easier now, too.

After talking through all that, the NP did a physical examination, which went fine. I'll see my oncologist again in another 3 months.

Upstairs in the infusion room, the nurse who gave me my Lupron shot was new. She said she's a traveling nurse from Florida! I don't know how hospital staffing works, but she said she's filling in for one of the regular nurses for the next 3 months.

Incidentally, today my left arm only feels sore at the vaccine injection site if I touch it. I suspect all soreness will be gone tomorrow.

2/19/21: Lupron + Other Updates

I think today was the first time I felt like my monthly Lupron appointment was a burden. I guess I had gotten so used to weekly appointments for chemo, and then Herceptin infusions every 3 weeks, that when I got down to only Lupron appointments every 4 weeks, it felt luxuriously infrequent by comparison. Normally I don't mind going in, but it's school vacation week, and a snowy day; I would have preferred to sleep in, and not drive in the snow.

There's been a lot of chatter about upgrading your masks for COVID-19 protection. I recently bought some KF94 masks, and I wore one for today's appointment. In the past, I would wear a surgical mask. The Cancer Center provides surgical masks for people to use instead of cloth masks, but if you already have a surgical mask, they just like to confirm that it's a new one. I was a little confused today when the person checking me in handed me a surgical mask along with my screening sticker and identification tags, without asking if my mask was new or not. Maybe she thought it was made of cloth? Or maybe they have a new procedure to hand out new masks to everyone. I decided not to swap out my mask since a KF94 is supposed to be better than a surgical mask, but I think if it happens again, I will wear their surgical mask on top of my KF94. That way they can be assured that I am wearing a new mask, no matter what other mask I may be wearing. 

(As an aside, I wonder if they want to be sure that everyone is wearing an actual medical grade surgical mask. All the surgical masks we have been able to purchase since the pandemic started look like surgical masks, but none are labeled with ASTM standards. By contrast, the surgical masks I bought from CVS for myself during chemo, before the pandemic, were clearly labeled as meeting ASTM Level 3 standards.) 

Anyway, the shot went smoothly, and I was glad to have the nurse who I think gives the best shots. 

Here are some other updates:

I have been diligently applying the scar cream to my port scar every night. It's part of my routine now, I put it on after brushing my teeth. It doesn't seem like it's doing anything, though; I think the scar looks the same, but it's hard to tell on a day-to-day basis. 

I think I'm doing fine on Tamoxifen. I have side effects, but they don't disrupt my activities of daily living, so I figure they are manageable. I expected the joint stiffness in my fingers to go away once I stopped exemestane, but this page lists joint stiffness as a "less common" side effect of Tamoxifen. I wonder if already having joint stiffness made it more likely for it to stick around when I switched to Tamoxifen... Very sadly for me, my hair is growing back thinner than it was before chemo; hair thinning is listed as one of the "more common" side effects. Also, my vision is poorer, but it's been a little blurry ever since chemo, so it's hard to know what to blame. Getting my eyes checked is on my list of things to do after the pandemic.

Meanwhile, the first three fingers on both my hands continue to feel very mildly numb and tingly. Most of the time I don't even notice it anymore, but if I tap my fingers together, I can feel it. 

12/20/20: (1 Year Post-Chemo) Cancerversary

One thing I did not expect going into this whole cancer journey was having so many new dates seared into my memory. June 17, 2019 was the day I was diagnosed, a.k.a. the day I found out my boobs were trying to kill me. August 23, 2019 was the day of my double mastectomy, a.k.a. the day I had to start figuring out how to accept being permanently disfigured. And December 20, 2019 was the day I finished chemotherapy, the end of the most grueling part of active treatment.   

It doesn't really feel like it's been a whole year since I finished chemo. This past year has been such a mess with the coronavirus and the presidential election, time didn't really seem to pass in a normal manner. 

Mostly I can't believe that even after a whole year, my hair is still so short. I still don't like it, and I still don't feel like myself.

As with all my other cancer milestones, I don't really know how I feel, exactly. My short hair, flat chest, and persistent side effects of hormone therapy are daily reminders that still make me feel like a cancer patient. The pandemic is making this time of year feel more somber than festive, but I have to admit that I don't mind not having any big holiday gatherings; I am pretty sure that if we were expected to go to social events and be merry, emotions would be masked, and participation would feel obligatory. There's also the added weight of the anniversary of my mom's passing (December 29), so really, I am very content to stay home every night and enjoy some peace and comfort. The extra quiet of this year's holiday season suits me just fine.  

9/4/20: (8.5 Months Post-Chemo) No More Hats!

For the first time since last November, I went out today without a hat!!

It felt amazing. I really felt just a little more like myself. 

I interacted with 5 people at my appointment today, and 3 out of 5 noticed and complimented my hair. Of course they will say something positive whether it looks good or not, but it just felt really great to be one step closer to having chemo behind me. 

My last chemo was December 20, so apparently it took over 8 months for my hair to grow long enough just to be held in place by a headband. Even now, without the headband, my hair pretty much sticks straight out. I am grateful, of course, that it is coming in thick and black!

The headband in the photo has pink flowers, it's my daughter's and not exactly my style. It fits well and stays in place, so I went ahead and ordered a few more simple headbands from the same business.

Yay!!

8/23/20: (1 Year Post-DMX) Cancerversary

Another date that marks another milestone. A year ago today, a skilled surgeon cut the cancer out of me. Once the pathology report came back clear, he declared me tumor-free. Later on, an oncology nurse used the term NED, no evidence of disease. (They were careful not to use the phrase "cancer-free" because it's impossible to know whether or not any rogue cancer cells are still lurking somewhere in my body.)

I'm not really sure how I feel. I don't think I feel particularly celebratory.

Cancer has hijacked my life for more than a year now, and I still feel like I'm in the middle of it. Surgery and chemo don't feel like they are "behind me". Some parts of my chest and underarms still feel numb from surgery. I know the numbness can actually be permanent, so I'm not expecting it to go away, but I guess I'm hoping I'll wake up one day and feel used to it. Like maybe it could feel familiar instead of weird.

Chemo doesn't feel "over and done with" either because I'm still wondering if the neuropathy in my fingers (and occasionally in my toes) could be a lingering side-effect. Plus I'm dying for my hair to grow back. I still wear a hat any time I leave the house. Yes, I'm grateful that my hair is growing back thick and black, but I hate the way it looks. It stands up more than it falls downward, and it looks like a helmet! Ugh! I really had no idea I was so vain. 

Side effects from hormone therapy seem to be getting worse. Thanks to the Lupron, hot flashes are common and annoying. Exemestane continues to cause joint stiffness. It's mostly in my fingers, but I can feel it in my legs, too. Any time I go up and down stairs, it's like it takes effort to bend my ankles. In the time it takes to cook dinner, my legs feel so stiff that sitting down to eat is a huge relief. And any time I stand up after sitting down, my knees crack. 

I have 2 infusions left for Herceptin. Still waiting for my port removal to be scheduled. Maybe once I'm past those two things, I'll feel more like I'm moving forward. 

I think I do feel frustrated. I miss feeling comfortable in my own body, and not being hyper-focused on ailments. I guess I feel kind of resigned, and wistful for my old self. 

Still, I'm optimistic that I'll one day feel "normal" again. This pandemic sure doesn't help, since nothing feels "normal" to anybody. Maybe when life out there settles into a "new normal", it'll be easier for me to do the same.

5/19/20: (5 Months Post-Chemo) Still Wearing Hats

Thanks to this global pandemic, I'm actually quite content to not have any social outings at which I might have to explain why I am still covering my head 5 months after I finished chemo. My hair is growing in, but it's so thick and straight that it grows literally outward, like each hair is radiating from my head. Sure, it's funny. But I hate it. And I'm much too vain to let others see it. Here, I'm willing to post only a side view.

When I wear a hat, it flattens the hair, but the hair gets flattened every which way, so it just ends up looking like bed-head.

Besides the rimmed hats I got from Headcovers Unlimited, I've also been wearing slouchy beanie hats around the house. Those knit hats are getting too warm for spring, though. I'll need to find something cooler for the summer. Still, what with the pandemic going on, I'm actually relieved I don't need to worry about being seen too much.

3/6/20: (2.5 Months Post-Chemo) My Hair is Growing Back

I'm still wearing a headcover any time I leave the house. I'm optimistic about not feeling the need to wear one by the time the weather really starts to warm up, which is good because my preferred headcover has been nice and warm for these past winter months, but not very practical for spring or summer.

With long hair, I never worried about going to a good stylist. I occasionally tried out a new place here or there, just for fun, but generally speaking, Supercuts was good enough for me. With super short hair, though, I'm wondering if I should look for a "real" salon...

Anyway, just for you loyal blog readers, here's a peek at my hair growing back.

1/30/20: My Hands Continue to Have Symptoms

Another week of paying very close attention to my hands and arms. When I wake up, I'm in 1 of 3 possible states:

• Guarded - My hands feel "puffy and tight", and it can be hard to make a fist. This state can take several hours to wear off.
• Moderate Alert - My hands feel "numb and tingly and puffy and tight" a.k.a. "weird". Sometimes only a couple fingers (usually the pinky and ring finger) feel tingly.
• High Alert - One or both hands feel like they "fell asleep". This feeling can sometimes also be limited to just a couple fingers. It's worrisome. I basically can't use my hands. 

In each state, the goal is to improve the status, or at least not make it worse. I need to get up, walk around, swing and stretch my arms. I have to avoid gripping things (e.g., cell phone, knife, toothbrush), which can trigger the next worse state.

I've started a new morning routine that includes arm and shoulder exercises (arm swings, arm circles, shoulder rolls, head rolls), the nerve glide exercises from my physical therapist, and rubbing each arm with moisturizer. My hands and arms definitely feel better after going through all that.

I have a theory about why I'm experiencing this weird arm swelling and nerve-related numbness and tingling. All the symptoms came on after school was back in session (after the holiday break), and after I started driving my dad to radiation daily. Up until then, from surgery through chemo, I was really taking it easy; Ken and the kids helped with household chores, and I only did light driving. For some reason (I think I felt like I ought to be getting back to "normal" by now), when we picked back up after the holidays, I jumped in with full pre-surgery routines, plus I'm driving my dad every day. (It's worth noting that when I drive, I still can't turn the steering wheel hand-over-hand without feeling some discomfort.) I think my arms are swelling from being over-used. Also, my chest and underarms were already feeling "weird", presumably from nerve regeneration. So maybe those two things combined - swelling causing pressure on my nerves - is what I am feeling. I don't know. Just an idea.

Unrelatedly, but for the record, I'm still losing hair. My eyebrows are almost gone, I've got just a few hairs hanging on. So weird. Interestingly, though, eyebrow hair must grow quickly, because I can already see tiny new hairs coming in.

1/17/20: (1 Month Post-Chemo, 5 Months Post-DMX) Side Effects and Symptoms

Both my cancers were hormone receptor-positive, which means estrogen and progesterone fueled their growth. Chemotherapy was supposed to kill any existing cancer cells that may have escaped from the tumors, but there's always a chance that whatever conditions in my body that produced the cancer cells in the first place still remain, and so could produce a new cancer. My hormone therapy is supposed to prevent recurrence; the goal is basically to eliminate the presence of estrogen, so there won't be any estrogen to fuel any new cancer growth.

My monthy injection of Lupron is for ovarian suppression; it stops my ovaries from making estrogen (and puts me into a chemically-induced menopause). However, other parts of the body also produce estrogen. So today my medical oncologist prescribed exemestane, a daily aromatase inhibitor pill that will stop any remaining production of estrogen.

I seem to have a compulsion for tracking my side effects and symptoms. So before I take my first exemestane pill tonight, I wanted to record my current baseline of how I'm doing.

It's been about a month since my last chemo infusion, and since then, I've been on just Herceptin and Lupron.

Interestingly, even after chemo ended, I continued to lose body hair, like on my legs and in my armpits. Like the hair on my head, though, it's not complete hair loss, so a few hairs remain.

Meanwhile, the hair on my head has started to grow back. I can see tiny new hairs interspersed with the slightly longer hairs that grew from shaved hair that never fell out.

I stopped noticing blood in my nose about 2 weeks after chemo ended. My sense of taste also seems to have fully recovered.

My eyesight still feels off. The blurriness isn't quite as bad as before, but it's still there.

The acne hasn't really gone away, either, but it's improving.

My belly still feels flabby. I remember being told that menopause makes losing weight more difficult. I haven't made a conscious effort to lose weight yet, though I am about 5 pounds heavier than I was before chemo.

I'm not as tired anymore, as evidenced by my ability to stay up past 9:00 pm on a regular basis. Also, during chemo, I almost always needed to lie down at some point in the late afternoon, but I haven't been doing that lately. (Perhaps relatedly, I've started to drink coffee again, and usually have a cup in the mid-afternoon.)

At 5 months out from my DMX, my chest and right underarm still feel weird, but to an even greater extent than before. The areas are still numb, but also tingly, especially when touched, and my chest actually feels tighter. I think this is what others refer to as the "iron bra" feeling. My upper right arm, particularly around the underarm area, sometimes feels like pins and needles. I wonder if all the increased sensations means that some of the nerves are growing back. And/or maybe I need to do my stretches more frequently and/or consistently.

The cording persists. It comes and goes, but is overall worse than it was at first.

For the record, the stitch that poked out from one of my incisions is finally gone. It was significantly smaller and less noticeable about a month after I first discovered it, but it took over 2 months to fully go away. Now there is a tiny hole where the stitch used to be. I'm assuming it will close up in time.

Recently I've noticed a couple new side effects / symptoms, as I reported to my medical oncologist today. There's the leg stiffness that I first noticed a couple weeks ago, and also the numbness and tingling in my fingers and swelling of my arms (possibly fluid retention) that just started this week.

Geez. When I lay it all out like that, it's depressing. I can hardly recognize my own body. It's hard to believe that one year ago, I felt perfectly healthy. Now, is there even a single part of my body that's come through cancer treatment unscathed?

Honestly, when I think about it, I think my ears, and my sense of hearing, are literally the only things that have not been affected.

From another perspective, of course, I know I'm lucky. I'm still here, and my prognosis is good.

12/7/19: I Shaved My Head

Actually, Ken shaved it. He said it was the saddest thing I've had to ask him to do. I cried through the whole thing.

But it was the right decision. I don't love my new bald head, but it's better than feeling like Gollum. It's the lesser of two undesirable options.

Last night at dinner, we talked with the kids about whether or not I should shave my head. They were both on board with it. They agreed my straggly hair looked pretty bad, and thought a clean shave would be better. They were remarkably unfazed with the final result, nonchalant even!

In the interest of Keeping It Real, I'm setting aside my vanity and posting photos.

Here's what 10 rounds of Taxol did to my hair. So sad.

And here's what little hair I had left.

This is what I look like now. No hair, no boobs, no fun.

I think I look like a Shaolin Monk, minus the orange robe.

It's only you loyal readers of my blog who get this sneak peek. If you see me in person, I'll be wearing my layers and hat.

In fact, just after the shaving, Ken and I pulled ourselves together and headed out to an early evening festive gathering. It was so nice to see supportive faces and receive loving hugs. And it turned out to be a good confidence builder, too, to know I can go out with my covered bald head and feel okay.  

Incidentally, a few people have expressed surprise when they see me and I'm wearing glasses. I am wearing them all the time now. After surgery, managing contact lenses just seemed like a bit of extra hassle that I didn't need. And then once I started having vision trouble as a side effect of chemo, I figured maybe I should try to minimize eye irritants, so I've continued to not wear contacts. Maybe I'll go back to wearing contacts at some point, I don't know. We'll see. 

12/5/19: Medical Oncologist Appointment

My medical oncologist appointments are usually on the same day as chemo treatments, but my doctor will be out of town tomorrow, so I got scheduled to see her a day earlier.

We went over my side effects. Every winter, the back of my hands get very dry, and I need to moisturize, moisturize, moisturize. This year, in addition to just being dry, I have a red, bumpy, itchy rash. My oncologist was confident that chemo is the culprit. Skin rash is listed as one of the many possible side effects of Taxol. She suggested a thick cream like Eucerin, or an ointment like Aquafor.

Regarding my hair, I told her I feel like Gollum from Lord of the Rings.

She said, "No! I won't let you think of yourself that way!" Instead, she suggested I think of myself like Jean-Luc Picard. In the past, she has also offered up young Sinead O'Connor as an example of a beautiful bald person.

 

Neither of those two fit, though, because I really do have straggly long hair like Gollum. Okay, that's an exaggeration. But at this point, the few strands of hair I do have aren't hiding the baldness at all. They just make it look worse. I didn't shave my head before because I was holding out hope that maybe I wouldn't really lose too much, like my aunt who had chemo years ago, whose hair thinned only enough that she noticed it, and others didn't. But now that I'm wearing a hat all the time in front of other people, there doesn't seem to be a point to not shaving it all off. I can't think of any redeeming value for keeping around what's left of my hair, especially when looking at it sparks the opposite of joy. If I shave it off now, at least my head will look uniform, and when the hair grows back, it'll come in all the same length. I'm going to think about it.

Anyway. Since I'm closing in on the end of chemo, I wanted to clarify how long I'll be getting Herceptin, the targeted therapy that I will continue to get via port infusions every 3 weeks after chemo ends. I thought I was supposed to get 1 year total, and I was trying to figure out whether or not the 3 months I already got at the same time as chemo count towards that 1 year. My oncologist said she thinks I'll get 17 more treatments, which works out to 51 more weeks, which is basically another full year. She said she would double-check and confirm the numbers, but really it doesn't matter. Whatever the treatment is, I'll just show up.

After talking about the Herceptin schedule, my oncologist also mentioned that after chemo ends, I'll start another part of my hormone therapy. At my first appointment, I remember she said I would be getting Tamoxifen. But today, she said "exemestane". I would not have been familiar with this word at all, except I just happened to do a lot of research over the weekend on my presumed Lupron + Tamoxifen regimen. I read these articles:

2018 ASCO [American Society of Clinical Oncology]: Aromatase Inhibitor Plus Ovarian Suppression Yields Benefit in High-Risk Premenopausal Patients With Breast Cancer

Adjuvant Endocrine Therapy in Premenopausal Women with Breast Cancer (From the web site of The National Center for Biotechnology Information, a part of the United States National Library of Medicine, a branch of the National Institutes of Health.)

Basically, for hormone therapy in pre-menopausal women with ER+ (estrogen receptor positive) breast cancer, there are three options:

1. Tamoxifen. This is a pill that blocks estrogen from binding to estrogen receptors in breast cancer cells. Tamoxifen is generally considered standard treatment.
2. Ovarian Suppression (OS) + Tamoxifen (T). My pathology showed that my cancers are strongly (>95%) estrogen positive, which means the cancer cells feed off estrogen a lot. I am getting ovarian suppression via monthly Lupron shots. The ovaries are the main source of estrogen in the body, so suppressing them (via a chemically-induced menopause) drastically reduces the amount of estrogen in the body. Other parts of the body still produce a little bit of estrogen, so Tamoxifen is still needed to block whatever estrogen is present. This is the regimen my oncologist mentioned at our first meeting.
3. Ovarian Suppression (OS) + Aromatase Inhibitor (AI). Aromatase is an enzyme that is needed for the body to produce estrogen. An aromatase inhibitor, like exemestane, stops the production of estrogen in the body. With Lupron suppressing the ovaries, and exemestane stopping the production of estrogen from other sources, there is no longer any estrogen in the body to feed cancer cells with estrogen receptors. This is the regimen my oncologist brought up today.

In discussing OS+AI, my oncologist straight up said, "Women hate it." I appreciated her honesty, though I was already familiar with the sentiment from my own research. From what I've read, there are so many potentially debilitating side effects from OS+AI that quality of life can be drastically reduced. A lot of women choose to stop taking an AI because they just can't stand it. But, it is the most aggressive treatment that has the highest likelihood of preventing recurrence. 

The articles also point out that the studies show that the benefits of OS+AI hold true only for women at "high risk" for recurrence; there doesn't seem to be any added benefit for women at "low risk". Again, I'm in that grey "intermediate" area. The fact that I'm getting chemotherapy at all nudges me into the "high risk" category. I'm not very young (< 35 years old), but I'm still considered "young", which is another risk factor. My tumors were small, but I had 3, so my body has some kind of environment conducive for cancer growth. I guess it's enough for my oncologist to want to err on the side of caution, and pursue the more aggressive treatment.

It occurs to me that if I'm recommended for the most aggressive treatment, and if side effects really are unbearable, I can always switch to Tamoxifen. It may not be as effective, but it's still effective. Tamoxifen, of course, has its own list of side effects, but apparently they tend to be more manageable than those from aromatase inhibitors. 

12/5/19: Cycle 9 Side Effects

Side effects remain consistent, though I've actually been feeling more tired than usual.

I think it's partly because I haven't been exercising as much. My goal is to exercise (usually that means walking) at least 30 minutes a day at least 5 days a week. But last week I didn't walk on my usual days, first because of my port appointment, and then because we were busy with Thanksgiving. This week I skipped a couple days, too. It was too cold and snowy to walk on some days, and I could have used our indoor stationary bike, but I just felt too tired. Or maybe I was unmotivated. I remember my physical therapist telling me that "movement begets movement", especially during chemotherapy, and that the opposite is also true, i.e., being inactive makes you more likely to stay inactive. Anyway, I need to try harder to keep up with my exercising!

I also haven't been sleeping as well, maybe because I haven't been exercising enough. But I've also been waking up warm in the middle of the night. I don't think they're hot flashes, because it's not like I'm sweating or anything. Maybe we just need to adjust the thermostat.

Or maybe it's just all the chemo catching up to me. I really felt like I started this whole business with a pretty good attitude, but I have to say, after 9 weeks of it, and 3 more to go, it's kind of feeling like a slog.

A couple people have asked me if I'm planning to throw an end-of-chemo party. Nope. First, I'm not really a party person. But also, I'm not sure I'll feel like celebrating. Yes, it'll definitely be good to be finished with chemo! But I will still be getting targeted therapy via port infusions every 3 weeks for the rest of a year. Plus I will still have ongoing hormone therapy, including a daily pill, with all its own side effects, starting after chemo ends. And it's not like all my chemo side effects will suddenly disappear; I have read that it can take weeks, in some cases months, to feel "normal" again after chemo ends. The hair alone can take months just to start growing back, and then it'll take even longer to actually grow to a desirable length. The day I can stop wearing hats, maybe that will be a good day to celebrate.

11/28/19: Cycle 8 Side Effects

My usual symptoms remain consistent:

• Continued hair loss (I'm too vain to post any more photos.)
• Blurry vision
• Mild headache
• Blood in stuffy/runny nose
• Acne (face, back, and scalp)
• Dry mouth (on day 1 of cycle)
• Insomnia / Trouble sleeping (on day 1 of cycle, due to steroid pre-med)
• Occasional mild neuropathy (mostly on days 3 and 4 of cycle)
• Tiredness / Fatigue (on days 3 through 6 of cycle)

I have my best days on the last day of each cycle (Thursday), and the first two days of the next cycle (Friday and Saturday).

I did notice that this week, my scalp was not as sensitive as it had been before. Still occasionally itchy or tingly, but no longer painful if touched. I wonder if that's because I have so little hair to bother my scalp at this point. Sigh. 

11/22/19: Chemo Cycle #8 of 12 + Medical Oncologist Appointment + Social Worker Visit

Today my cousin drove me to my treatment. She brought her laptop and worked remotely while I was in my appointments, and the rest of the time we had plenty to chat about. Really, so funny that the time spent getting chemo for cancer can be spent in such an enjoyable way with good company!

We budgeted for traffic, and still arrived a bit early for my 8:15 port access appointment. The port nurse noticed the irritated skin around my port right away. She expressed frustration because the port should have healed long ago; I shouldn't need to be using dressings with adhesives this far out, and for so long. She said the incision doesn't look infected, so she recommended I stop using the antibiotic ointment, and leave the incision uncovered for a while. I should just be sure to regularly wash it with soap and water.

My appointment with the medical oncologist wasn't until 9:00, so we had a bit of a wait. When the medical assistant took my vitals, she skipped height and oxygen. (Every other time until today, they've always measured height, weight, blood pressure, oxygen, and temperature.) I asked why, and she just said it wasn't necessary to take those measurements every week.

I love when my medical oncologist hugs me hello and goodbye! When she asked about my recent side effects, I told her about the hair loss, and she was careful to validate my feelings. She reassured me that everything I'm feeling is normal; in fact, the timing is in line with the progression of emotions experienced by other patients, too. She asked if I was interested in a wig, and I said no. I was surprised myself that I didn't take longer to hem and haw, or ask for a prescription just in case. I think in an effort to make me feel better about my response, she talked about how wigs are not always the be-all and end-all solution they are sometimes made out to be, because some people find them hot or uncomfortable or itchy, and sometimes they cause a rash on the scalp. She also mentioned the possibility of shaving my head, but I am just not feeling that option, either.

Regarding my port incision, she agreed with the port nurse that there is an unusually high number of port incisions that haven't been healing properly. She said the appropriate people are being informed, and hopefully they will figure out what is going on. I hope they get everything resolved before I get my port removed, so I won't have so much trouble with the incision healing from that surgery! (I won't get my port out for almost another year, so they have time.)

During the physical exam, I mentioned that my belly feels flabbier. I haven't had a flat tummy since having kids, so I'm used to a little belly fat, and it's not that it's getting bigger, it's just flabbier, not as firm. I know weight gain is a side effect of Lupron (because weight gain is a side effect of the menopause that the Lupron causes), so I was surprised when the doctor said the flabbiness was probably from the steroid pre-med. She said it's temporary while taking the Decadron. I hope she's right!

We got to my bay around 9:45, and I started my pre-meds around 10:00.

About 10:30, my social worker came in, and my cousin stepped out. The social worker wanted to follow up on our conversation last week about hair loss. I told her how I found her words last week very helpful. We talked some more about how visible hair loss is as a side effect uniquely associated with cancer patients, and how even efforts to hide the hair loss (like with a wig or hats) are themselves visible, so it's the one side effect that just can't be masked.

She specifically asked how Ken and the kids are doing. I said I think the kids are doing remarkably well, but maybe Ken could use a bit more support. I know he appreciates having work as a way to compartmentalize, but being a caregiver is a huge weight to carry, and also a role that is often overlooked. The infusion nurse was in the bay at this time, having just started my Herceptin, and she suggested I help brainstorm friends he could go out with. Even if they don't talk about feelings, it would be good for him to get a break.

The social worker also asked me about Thanksgiving coming up next week. It'll be my first time seeing many family members since starting chemo. I'm not exactly anxious, but there's uncertainty in how I will feel. Finally, she encouraged me again to attend the in-person support group, perhaps when my weekly chemo ends. The group meets at an inconvenient time for me, but I agreed it might be more doable when I'm not getting treatment quite so often.

I started Taxol around 11:00, and finished up just around 12:00.

When the infusion nurse de-accessed my port, she took a photo of the incision to show her colleague who specializes in port care. (This person calls herself the "Port Authority"!! Hahahaha. I love it.)

My nurse said it looks like the incision won't be closing up tightly, which I assume means a more visible scar. She said when I get my port out, I should tell the surgeon that sutures may work better than Dermabond skin glue to close the incision. But that's a much later conversation.

She also suggested using Aquafor on the irritated skin around my port. She gave me a couple large gauze pads to place over the area, to keep the ointment from getting on my clothes. She figured the pads are large enough that maybe they will stay in place just being tucked under my camisole, without using any adhesives.

Finally, she gave me my blood work. Two values were out of range. Im Gran (Immature Granuloyctes) continues to be a little high, a little higher than last week. And AbsLymp (Absolute Lymphocyte) was a little low, which I saw before in Cycle #6.

All told, this visit was about 4 hours. We did order lunch, but finished and left before it was delivered! We decided to eat at a local restaurant nearby. It was nice spending the time together, even if it was precipitated by chemo!

11/21/19: Cycle 7 Side Effects

Omg. This hair loss business is traumatic for sure. I can't stand it. I've cried more about losing my hair than about losing my boobs.

My scalp downright hurts. It's tingly and itchy and anything that touches it causes pain. Not a lot, but enough to trigger an "ow".

Oh, I guess I'm not such a genius after all. My Glad Press 'n Seal trick worked for a while, but I guess it just took longer for my skin to react. Now it's red and rashy at all points of contact with bandaids, medical tape, and Glad Press 'n Seal. I actually only recently remembered that when my mom had a wound, the nurse used a skin barrier wipe to protect her skin from adhesives. By the time I thought of it, I figured my wound was close to healing, so I didn't bother with it, but maybe I should look into it after all. In the meantime, I guess I'll still use the antibiotic ointment, but just leave the wound uncovered. It still has 3 whitish spots that look like they aren't done healing.

Everything else is the same as usual: background headache, blurry vision, blood in stuffy/runny nose, acne, occasional mild neuropathy, fatigue Sunday through Wednesday.

I haven't mentioned it in a while, but Friday night I am always up late, presumably because of the steroid pre-med Decadron. I consistently get about 3-4 hours of sleep on Friday night, but still have a good day on Saturday, because the steroid is still in my system. It wears off by Sunday, when the fatigue kicks in. By Thursday my energy level feels almost normal. It's helpful having a predictable energy schedule to plan around: lots of energy Friday through Saturday, tapers on Sunday, tired through Wednesday, fine on Thursday. Repeat.

11/15/19: I Wore a Headcover

Last night, when I met a good friend for dinner, I decided not to wear a headcover. I figured, we've been friends for 20 years now, I knew this person wouldn't judge me, and I thought it would be a good experiment to just see how I felt, being out and about with my thinning hair.

We sat at the bar, with our backs facing the main entrance. I was pretty self-conscious of how visible my bald line must be to anyone walking into the bar area. It didn't bother me in that I didn't spend much time wondering if anyone noticed or cared, but I did notice that I spent a lot of time fussing with my hair, running my fingers through the top so some hair would fall straight back over the bald line. 

Tonight I did another experiment. We went out to dinner, me and Ken and the kids, and I wore a headcover that I had actually bought a couple weeks ago in preparation for the possibility of needing it.

I had picked this headcover because I thought it was simple yet versatile, and being as averse to shopping as I am, I just wanted to minimize the shopping. I wanted something that had a little shape to it, but not have the rigidity of baseball caps, or their logos. I was also given the advice to find something soft, to help soothe my sensitive scalp. 

So when I wore the hat to dinner tonight, I was still self-conscious, and this time I did wonder if other diners might just casually look over and think my hat was unusual. I found that the full-head coverage and tie closure were helpful, because they made the hat feel secure, so I wasn't constantly fussing with exposed hair, or scratching at my itchy scalp, or re-positioning the hat, which I think I might do if I were wearing just a regular beanie hat. (They are cute, and I'd be open to wearing them, if I ever managed to drag myself shopping).

Overall, I found wearing the headcover to be less distracting to the actual dining experience than not wearing a headcover. 

Taking my nurse's advice, I'm going to start wearing the headcover at home all the time, so I get used to the feeling. With the weather getting colder, it's great that it keeps me warm, too!

I put together these photos to show my hair loss progression in one view. I know the hair thinning might not look so bad from the front, and you can't really tell how thin it is in the photos. But compared to what I'm used to, it's super dramatically different, and it sucks. The hat does give me a feeling not exactly of control, but like, a little bit of empowerment through resigned acceptance, if that makes any sense. 

11/15/19: Chemo Cycle #7 of 12 + Social Worker Visit + (12 Weeks Post-DMX) Physical Therapy Appointment #8

Ken dropped me off today so he could teach a double lab in the middle of the day.

I had a 9:45 appointment to get my port accessed and blood drawn. The port nurse noticed that my skin was irritated again, and I told her I've been alternating between bandaids and gauze with medical tape to cover the incision with antibiotic ointment. She agreed that the incision looks better. She said she sees every port that goes through the Cancer Center, and she's noticed an increase in the number of incisions that don't heal well. She's been keeping track of all new ports starting from a couple months ago, and I'm one of her data points! A whopping 55% of new ports have had issues. She thinks it may be related to stitches poking through and not dissolving properly. Anyway, she's reporting her data to the appropriate people at the hospital, and she says they are looking into it. It feels pretty great to know there are nurses like her who are actively trying to improve patient care!

We chatted a bit about my hair loss, too. She said that years ago, the Cancer Center used to provide their patients with cold caps, to help prevent hair loss. But they stopped at some point because of a concern that the cold that prevents hair loss also prevents the chemotherapy drug from circulating in the scalp, which may actually increase the likelihood of stray cancer cells surviving in the scalp. So one perspective is to look at hair loss as evidence that at least the chemotherapy is doing it's job; if it's killing fast-growing hair follicles, hopefully it's also killing cancer cells lurking in the scalp.

With my port accessed, I went upstairs to the infusion room, and the medical assistant took my vitals. She showed me to my bay around 10:15, and she set me up with a pillow and a warmed blanket, as usual. I ordered my lunch, plus one for Ken since he'd be joining me later.

My infusion nurse came in to ask about my weekly side effects, and suddenly the tears just started falling. She sat down and was very comforting. She reassured me that losing my hair is a kind of loss, and so there is a grieving process. I heard the same advice about losing my breasts when I had my surgery. It's just a lot to deal with, especially at the same time.

She asked if I had considered a wig, and I said I'm not really up for that option. She suggested again that I could cut my hair shorter, it might make the thinning less visible. I don't know, I'm just not feeling a hair cut, either. Basically, if I want to do something about the hair thinning, the options come down to getting a short hair cut, wearing a wig, or wearing a headcover like a scarf or hat; just none of them feel like "me". So the "best" option feels more like the least uncomfortable, least drastic option. My nurse encouraged me to get some hats, like a bunch of beanie-style hats in all different colors, and just wear them all the time so I get used to wearing them myself. Without my even mentioning it, she touched upon my hesitation to wear a hat to dinner last night (I didn't), and also suggested getting a more formed hat for when a winter beanie or baseball cap wouldn't feel appropriate, like when going out to a nice restaurant.

Anyway. I took my pre-meds around 10:30. My nurse said we would have to wait for my doctor to put in new orders, and then wait for the pharmacy to prepare the drugs. In the meantime, she got my IV set up, and took a look at the port incision through the clear dressing. She said it does look better, and to keep using the antibiotic ointment, since it still looks like it has some more healing to do.

Around 11:00 the social worker stopped by for a brief but helpful visit. (She just happened to see me while passing through the infusion room, but had another appointment coming up.) She sat down and asked me how my week went, and again the tears just came. She gave me some much needed comfort, saying that even though side effects can be predicted, that doesn't make them any easier when they happen. She also pointed out that hair loss in particular is so visible and drastic that it makes the whole idea of being in cancer treatment feel more real. I think that's especially true for me, because with other side effects being "mild" and not visible, and not experiencing any nausea at all (knock on wood), I kept thinking I was getting off easy, which makes this dramatic manifestation of cancer treatment feel all that more distressing.

My physical therapist came in at 11:15. She worked on my cording, and then declared it resolved! She said she couldn't feel it anymore. She also took measurements of my range of motion, so now I have objective data that my range has improved to be within the low end of being fully functional. Yay!

She took a peek at my incision scars, and said they are healing really well. I've been massaging them as instructed sort of intermittently; it just feels weird when I touch them. I'm supposed to keep up with the massaging as much as I feel comfortable, and also continue to stretch, since I still feel a lot of tightness, a little soreness, and my range of motion has room for improvement. We decided to set up a follow-up appointment in December to see how things are going, and we'll have that appointment in her regular exam room so there is more privacy for her to work on my scars.

I started the Herceptin around 11:30, during the physical therapy visit, and then started Taxol around 12:00.

Once finished, the nurse gave me my blood work report. My Im Gran (Immature Granulyte) is still a little high, a bit higher than last time. For the first time, my Monos (Monocyte) number is out of range on the low side. I kind of wonder if the healing action going on in my port incision is affecting these numbers. Also for the first time, one of my liver numbers, TotProt (Total Protein count of albumin and globulin, which are both within range), is very slightly out of range on the low side. I guess all this is normal during chemotherapy, so I'm not worried about anything, just find it an interesting exercise to track my blood work.

My nurse also gave me a note with instructions to call the cardiology department for an echocardiogram appointment. I need an echocardiogram every 3 months, I think because Herceptin can weaken the heart. (I called and they said they need to get insurance pre-authorization first, so they will call me back once they have it.)

Ken hadn't returned yet, so at 1:15, with his lunch in hand, I went downstairs to wait in the larger waiting area downstairs. Not counting the time I had to wait for Ken, this appointment was about 3 1/2 hours.

11/14/19: Cycle 6 Side Effects

Omg. Just last week, I was feeling okay with my hair thinning. I figured, if this is as bad as it gets, I can handle it.

But now it's worse. Pictures really do not convey just how disturbingly thin my hair is now.

My part is very pronounced. I concede that it's not so bad from the front. (All my hair is pushed in front of my shoulders for this photo.)

From the back, though... My part now extends all the way to the back of my head, and it ends in not exactly a bald spot, but like a bald line.

I'm going out to dinner with a friend tonight, and I can't decide if I should wear a headcover or not. I did buy a couple options from Headcovers Unlimited. I need to figure out if I would feel more self-conscious about a bald line or a headcover. I don't have any stylish hats. I do have a few baseball hats, but I think I'd feel equally self-conscious in any kind of headwear, since I don't normally wear any.

Meanwhile, my sense of taste continues to change. We had pasta with a tomato sauce on Sunday, and I was cautious in case it tasted metallic like last week's ketchup. Instead, it was just plain bland! I made dinner myself, and I know how much salt, pepper, basil, and oregano I put in. I couldn't taste any of it, and Ken said it was definitely just me. Weird, but I guess food tasting bland is better than it tasting like metal.

I still have an almost constant background headache, blurry vision, blood in stuffy/runny nose, acne, and occasional mild neuropathy. Tiredness / fatigue continues to span Sunday through Wednesday.

I feel so relieved that I'm not working this year, so I can just hibernate at home, and only go out when I want to.