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.

6/18/19: I Watched a Movie

I've tried to keep my posts mostly factual, but I would be remiss if I didn't mention the emotional toll.

Last night my husband and I watched the movie Always Be My Maybe. I'd already seen it once, so I knew exactly what to expect.

*** Movie Spoiler Alert ***

The part when Marcus's mother dies caught me by surprise. I mean, I knew it would happen. But I didn't expect it to hit me so hard. Mothers die in movies all the time. But now, the idea of it wasn't just abstract. It's a very real possibility that I am very afraid to face.

10/18/19: Chemo Cycle #3 of 12 + Medical Oncologist Appointment + Social Worker Visit + (8 Weeks Post-DMX) Physical Therapy Appointment #4

This post is going to be a long one. I had kind of a packed schedule today.

Ken dropped me off at the Cancer Center at 12:30, went back to teach one class, then returned and joined me in my bay in the infusion room.

Port Access

When I get my port accessed, the port nurse starts by laying out all the necessary supplies. She usually sets out 3 packets of Betadine, the antiseptic she uses instead of the usual chlorhexidine, to which I seem to have an allergy. Chlorhexidine is now listed on my medical record, and I get a special orange band every time I check in to indicate that I have an allergy.

But today, as the port nurse was finishing up her preparations, I noticed she hadn't put out the Betadine. In previous appointments, she's told me very openly that I should feel free to remind her that I "need the brown stuff". At first I wondered if maybe she'd always remember, since she helped diagnose my allergy in the first place! But I know she sees scores of patients every week, so I don't hold it against her that she forgot, or didn't see the orange bracelet. (I was wearing a long sleeve sweater that may have hid the bracelet. I'll try to be more diligent about keeping my medical bracelets visible!) Anyway, I spoke up, and the port nurse thanked me for reminding her. Everything was fine, but it was a clear example of how I need to be fully engaged in my own medical care!

Medical Oncologist Appointment

After my port was accessed, a medical assistant took my vitals. My medical oncologist was running late by 20 minutes, but she was as warm and attentive as always when I saw her. I love that she's a hugger! Besides going over all the medical stuff, she gave me lots of encouragement and words of support.

One thing I mentioned is that when I was given a printed list of my medications to confirm, it listed docetaxel (Taxotere) instead of paclitaxel (Taxol). It looked like it was added by my OB/GYN. Somehow she entered the wrong drug, so my oncologist just deleted it. Said she doesn't like to list chemo drugs on prescription lists anyway. Again, another reminder for me to be vigilant in every part of my medical care!

The oncologist wanted to know all about my side effects. I reported that the continued sporadic, dry cough is not as bad as the first week, and I don't consider it bothersome. She was a bit concerned; I think she is on hyper alert for anything that might indicate a possible infection. She wants me to take loratadine (brand name Claritin) daily to see if that helps. Interestingly, even though it's an over-the-counter medication, she submitted a prescription to my pharmacy; she said if they can provide a generic pill, it might be cheaper than what is available on the shelves. I really appreciate how she took this step to try to address my out-of-pocket costs.

I also told her about not being able to focus my eyes on Monday. She said it does sound like a sensitivity to sunlight, which is expected on Taxol but not usually a big issue. Everybody is different, and this is just how my body is responding. In fact, now that I think about it, it's not that surprising because I do think I have sensitive eyes; I tend to squint a lot if I'm not wearing sunglasses, and my night vision is pretty poor. The oncologist said I should be careful even on cloudy days, because it's the UV light that's problematic. I should also wear long sleeves and pants when going outside; I know for sure I already have a sun sensitivity that appears as a rough, red, itchy rash on my forearms, and I'm not interested in finding out how it reacts to sunlight while on chemo!

Very interestingly, my oncologist pointed out that pretty much all the medical studies and clinical trials for chemotherapy drugs, including their dosing and side effects, have generally involved predominantly white women, and in her practice, she has noticed that her patients of Asian descent tend to respond differently than white patients! So that might be a factor in why I'm experiencing less common side effects. In fact, she said her Asian patients tend to have a harder time with chemo in general, so she was pleased that I'm doing relatively well so far.

She confirmed that she didn't want to give me the flu shot last week because of the cough, but since the cough seems mild, she would order a flu shot for today. With chemo compromising my immune system, I definitely don't want to get the flu!

Finally, she did a physical exam. She listened to my lungs and heart, and she looked at my port and surgery incisions to make sure they are healing well.

Social Worker Visit

I got to the infusion room late for my appointment, but they knew I was meeting with my medical oncologist. I got settled in my bay, and while waiting for my infusion nurse, my social worker came in for a visit.

She asked how each of us are doing - me, Ken, and the kids - and we talked about expectations regarding the level of support I might be receiving from friends and family. I told her how this is the first week I've had since surgery that I wasn't completely focused on recovery or overwhelmed with doctor appointments all week. It's like I am finally popping up for air, and now we can hopefully start to settle into a kind of routine, even if it does include Friday chemo appointments. I mentioned my blog and how it's kind of therapeutic for me; she was very supportive and encouraged me to keep it up.

She also told me about an amazing organization called the Ellie Fund, which provides support services for breast cancer patients in active treatment. Incidentally, a couple friends have told me about Cleaning for a Reason, an organization that provides free house-cleaning services to women undergoing treatment for any cancer. I appreciate these organizations so much! Right now I feel like we are in good shape, but it's great to know these options exist.

Chemotherapy + Targeted Therapy

Soon after the social worker arrived, my infusion nurse got me started on my pre-meds. This time, I had the same dose of Benadryl as last week, but I got it via a pill. The nurse said the side effects should be less pronounced when taking the medication orally rather than via the port. My Decadron dose was also the same as last time, and I again took it orally via 3 pills. Pepcid was the only pre-med that was administered via the port.

I started Herceptin at 2:30, and then started Taxol at 3:00.

Some time during the infusions, I noticed my arms started to feel kind of weak, like it was an effort to hold them up. This happened in previous visits, too, but what with feeling loopy from the Benadryl, I sort of wondered if maybe I was imagining it. Anyway, turns out, muscle weakness can be a side effect of both Benadryl and Decadron. The feeling was temporary, and my arms felt mostly fine by the time we left.

I also continued to experience a bit of loopiness and drowsiness, which I think is typical for Benadryl, so it's good Ken is still driving me for now. I'm still hopeful that maybe I'll get used to all the drugs so I can drive myself at some point; it would just be so much more convenient.

Physical Therapy Appointment #4

Soon after I started the Herceptin, the physical therapist came by. She closed the curtain for my bay and asked me how things were going.

I told her how pleased I've been with the improvement of my range of motion. She wasn't able to take any measurements with me in the infusion chair, but it's definitely something I can easily describe, even if we can't quantify it with numbers. She thinks maybe next week she'll give me new exercises since some of the current ones might be too easy now.

She spent most of the time working on the cording in my right underarm. I could definitely feel some discomfort as she massaged the areas, including the new length of cord in my upper arm. She said she will schedule herself to come during my infusions on Fridays to work on the cording. (I checked the online patient portal, and she already scheduled next week's session. Yay!)

Ken arrived during the physical therapy visit. He saw the curtain was closed, so he waited in a nearby waiting area. He met the physical therapist as she was leaving. I knew Ken was driving back and forth and teaching during his usual lunch period, so he was glad that I had ordered him a lunch! (The medical assistant who brought me to my bay asked if I was alone today, and when I told her Ken would be arriving late, she thoughtfully suggested I still order food for him!)

Flu Shot

At 4:00, the infusion nurse de-accessed my port.

I mentioned that I thought the medical oncologist had said I should get a flu shot today. The nurse checked the computer system. Turned out, we had to wait for the oncologist to put in the order, and also for the pharmacy to send up the shot. Once again, I had to take responsibility for my own health care!

I got the shot just before 4:30, and we headed home. All told, today's visit was 4 hours.

Blood Work

This week's blood work showed a decrease in my white blood cell count outside the normal range. Chemotherapy works by killing cells that divide quickly, which includes not only cancer cells, but also the fast-growing cells of hair (resulting in hair loss), the digestive track (resulting in nausea), and bone marrow, where blood cells are made. The white blood cell count is expected to decrease below the normal range, and then level off. My infusion nurse said they don't worry when the count simply dips below the range; instead, they look to see if the count levels off and then suddenly dips again, or if it continues to dip without leveling off.

Since my white blood cell count is lower than normal, even if it's not yet concerning, it does mean I have an increased risk for infection, so I need to be careful not to injure myself or get sick! In the TMI department, I'll mention that I'm not shaving during chemo because I don't want to risk nicking myself by accident with the razor. 

11/8/19: Chemo Cycle #6 of 12 + Medical Oncologist Appointment + (11 Weeks Post-DMX) Physical Therapy Appointment #7

With today's treatment, I'm halfway finished with chemo!

My 8:15 appointment was the earliest it's ever been. Accounting for traffic, we left the house at 7:15, before the kids usually wake up for school. But today we made sure they were up before we left the house, and a friend in town drove them to school. Ken took the day off and drove today.

I got my port accessed (I could feel a small pinch, so I guess I didn't use enough numbing cream today), had some blood drawn, had my vitals taken, then went in for an appointment with my medical oncologist.

I mentioned that I've noticed my blood pressure has gone up. My pre-chemo blood pressure was always something in the 110s over something in the 60s. Now it ranges anywhere from the 110s-130s over 60s-80s. I guess it's still in the normal range, so not considered concerning, but it's still relatively high for me. My oncologist said the steroid can cause high blood pressure, and also just the stress of having cancer and being in active treatment can be a factor. Apparently both Taxol and Herceptin can cause high blood pressure, too.

I asked her for her thoughts on whether or not I can drive myself to future appointments, and she said it's really up to me, if I feel up to it. She did confirm that my chemo regimen is not expected to change.

The most important part of these appointments, I think, is for me to report my side effects, so she can make sure I am tolerating the treatment. If any side effects are too severe, she could adjust my medication doses, or prescribe additional medications to manage side effects. Anyway, all my side effects are so relatively mild that it sort of felt like I was looking for things to report! I guess I'd call that a good thing. My oncologist was pleased with how well things have been going.

She said to continue with the loratadine, since does seem to help with the cough.

She did a physical exam, and looked at my surgery incisions. She said what's left of the tiny stitch didn't look infected, so instead of triple antibiotic ointment, I could use Aquafor. But I shouldn't use a bandaid to cover it up, because she could see my skin was getting irritated. (Later at home, I discovered that a small piece of Glad Press 'n Seal works as a great bandaid alternative for just keeping the ointment in place and off my clothes.)

I mentioned that the area around the port was achy today, and I suspect I didn't put enough numbing cream on it. She said to just go ahead and be generous with how much cream to use, and instead turned her focus to the port incision. She said it doesn't seem to be healing well. I was glad she noticed, actually, because I've been disappointed in the way it looks; I'm anxious for it to heal, but it's not a smooth scar. There are still a couple small places where a scab hasn't fully formed, so it can't fall off. I'm not sure what's going on there. She said it doesn't look infected, so really there's not much to do but wait and see. Ken says they will cut me open in the same place anyway when my port gets removed, so I can just hope that the surgeon who does the removal does a better job with closing the incision! I mean, I guess that's true, but I'll still have my port for almost a year, so it doesn't make me feel much better about right now.

Finally, I'll mention that she looked at my nails, and reminded me to keep them cut short. I don't remember being told to do this before, so I looked it up when I got home. I found a helpful page from Memorial Sloan Kettering Cancer Center about how Taxol might affect nails, and what I can do to try to prevent nail changes.

I got settled in my infusion bay around 9:45, and started my pre-meds at 10:00.

My regular infusion nurse was back, and she gave me some of her thoughts on hair thinning. She said I definitely shouldn't shave it all off, because she still thinks I won't lose it all. She said she thinks my hair still looks good, that the thinning really isn't noticeable to other people. She said I could cut my hair shorter if I want it to look fuller, but I should only do it if I want to. I really appreciate how she and last week's nurse presented some options, but then reminded me that it's always up to me, that I should do what feels best for me.

When I asked my infusion nurse about whether or not I can drive myself in the future, she was quick to say that she definitely thinks I can. The concern is mostly about the Benadryl pre-med making me drowsy, but by the time I leave, I should have a good feel for whether or not I'm alert enough to drive. She suggested I do a trial run and drive home on a day when Ken is with me, so he can both observe me and be a back-up if I don't think I can do it.

My physical therapist came in around 10:30, and I started the Herceptin soon after.

The physical therapist worked on my cording for just a little while. She said it's so small now, maybe it'll be gone by next week. I told her about the muscle soreness I was feeling along my ribs, but around back. She was able to identify the muscle, and she gave me a new stretch to help that particular area. She also gave me a recommendation to follow a physical therapist on Instagram who is certified for oncology and lymphedema. She posts a lot of suggestions for stretches, including helpful videos.

I started Taxol around 11:15.

An hour later, a different nurse de-accessed my port, then looked curiously at my port incision, saying it looked red. She had my assigned infusion nurse look at it. My infusion nurse said it didn't look infected, said it's clearly still healing, and maybe there was a stitch or two not dissolving. She suggested I use some triple antibiotic ointment on it, and see if it helps. Ken mentioned that I had said I accidentally got some of the numbing cream into the incision today. She said it's okay, I should try to avoid doing that, but a bit of accidental exposure shouldn't be problematic.

My infusion nurse also brought me my blood work. 3 numbers were just slightly out of range: Baso (Basophil) was a little high, Im Gran (Immature Granulyte) was a little high, and AbsLymp (Absolute lymphocyte) was very slightly low. They're all related to white blood cell count, so they have to do with possible infection, or maybe even allergies. My medical oncologist had particularly asked me if I might have any kind of infection (I don't), and I wonder if these numbers helped prompt that question. Still, she said my overall numbers were good, so mostly I'll take these counts as a reminder to keep up with my handwashing and water drinking and other preventative measures.

We left just after 12:30, which means total visit time was about 4 1/2 hours. Incidentally, we did not get a free lunch today! Guess we finally stumbled on a time frame that didn't warrant it. Haha. Ken and I had a nice lunch out, and then we went to a nearby Costco. Surprisingly, we ran into a friend from town, spent some time catching up with her, and she said she wouldn't have known I had lost a lot of hair if I didn't tell her. That was nice to hear. She's a pretty straight shooter, so I think she meant it.