These days, the focus is so much on my chemo that I sometimes forget I'm still recovering from DMX surgery.
I'm able to get by now without the larger seat belt pillow that went across my chest; the pressure of the seat belt still feels weird, but it's bearable. I don't like anything putting pressure on my port, so I'm still using the smaller seat belt pillow when driving, placed on my shoulder to keep the seat belt off my port.
Over the last week or so, I've been feeling a lot more in my chest area. It's still just plain weird. There's the tightnesss of the "iron bra" sensation, but it's more than that. If I touch some areas that were previously numb, it feels tingly. Occasionally, I'll get a shooting feeling in one or both incisions, but it's not really very painful, maybe just like a strong sensation.
I don't know anything about human anatomy, but there are these muscles, about the same level as my incisions but around back, below my underarms. Anyway, they're sore.
I think I have my full range of motion back, but only if I move slowly. My muscles are definitely still tight and need stretching. I can drive, but some muscles are still strained if I turn the steering wheel hand over hand; it's easier to shuffle my hands along the steering wheel. I am doing everything around the house that I did before surgery, though I can feel some limitations in the kitchen; motions like wiping down the table, or mixing stuff in a bowl, still feel weird, and I can't do them for long, or else "discomfort" in my incisions and chest area moves towards "pain". Same goes if I do anything that requires strength in my arms, like lifting heavy bags of groceries; I need to be careful not to do those things too much or too quickly.
Sometimes I'm not sure if I'm overdoing it, so I should rest more, or if I'm just getting my feeling back, and this is what it feels like when numbness gradually goes away. Maybe it's a bit of both.
One last thing. I'm still sleeping on my back. I used to sleep on my side or tummy, but it still feels weird. Not painful, so I could if I wanted to, but just weird.
Thursday, October 31, 2019
10/31/19: Cycle 4 Side Effects
My hair is definitely thinning. It may not be noticeable to others yet, but it's happening. I've always had a lot of hair, so every time I shower or brush my hair, I'm used to hair coming out. That's normal for me. When my scalp started feeling sensitive last week, I actually had not noticed an increase in the amount of hair in my hairbrush. But when gathering my hair like for a ponytail, it felt thinner.
The real evidence came after a shower on Saturday. We have a drain cover to catch hair. It slows down the water drainage, so I can't clean the catch right away, I have to wait until all the water drains out first. Ken was the first to look after all the water drained, and he came to me, looking a little concerned, and said very sympathetically that there was WAY more hair than usual in the drain.
I guess I've gotten off easy so far with side effects. If this is it, it is what it is.
On Monday, I saw for myself. If I so much as touched my hair, strands came out. I took a shower, and yep, WAY more hair than usual came out with my comb.
On Tuesday morning, this is what one single pass of my hairbrush through my hair looked like.
As if that weren't traumatic enough, this is what one single pass of my comb after a shower looked like today.
My hair even feels lighter, as if I got a hair cut. Frankly, when I look at how much hair is in the trash, I can't believe there's any left on my head.
Others in Facebook support groups have posted photos of their hair falling out in thick clumps, so again, I guess I can consider myself lucky. My scalp is still sensitive - it feels kind of like when you take your hair out of a super tight ponytail - so I'm guessing more hair loss is still to come.
Meanwhile, other symptoms have been consistent with previous weeks. I've still got blurry vision, a mild headache, and acne. (The vision is slightly better; I wonder if the lack of sun all week has helped.) Still seeing blood in my occasional stuffy/runny nose, and had a bit of neuropathy (tingly toes) here and there. Energy-wise, Saturday I felt good, despite not sleeping well on Friday night. Sunday I started to drag, Monday I was super tired, and Tuesday I was dragging again; on those days I'm useless after dinner. Wednesday was better, but I still felt done by dinner time. Today, Thursday, I hope I will get a good day in before starting a new cycle tomorrow.
The real evidence came after a shower on Saturday. We have a drain cover to catch hair. It slows down the water drainage, so I can't clean the catch right away, I have to wait until all the water drains out first. Ken was the first to look after all the water drained, and he came to me, looking a little concerned, and said very sympathetically that there was WAY more hair than usual in the drain.
I guess I've gotten off easy so far with side effects. If this is it, it is what it is.
On Monday, I saw for myself. If I so much as touched my hair, strands came out. I took a shower, and yep, WAY more hair than usual came out with my comb.
On Tuesday morning, this is what one single pass of my hairbrush through my hair looked like.
As if that weren't traumatic enough, this is what one single pass of my comb after a shower looked like today.
My hair even feels lighter, as if I got a hair cut. Frankly, when I look at how much hair is in the trash, I can't believe there's any left on my head.
Others in Facebook support groups have posted photos of their hair falling out in thick clumps, so again, I guess I can consider myself lucky. My scalp is still sensitive - it feels kind of like when you take your hair out of a super tight ponytail - so I'm guessing more hair loss is still to come.
Meanwhile, other symptoms have been consistent with previous weeks. I've still got blurry vision, a mild headache, and acne. (The vision is slightly better; I wonder if the lack of sun all week has helped.) Still seeing blood in my occasional stuffy/runny nose, and had a bit of neuropathy (tingly toes) here and there. Energy-wise, Saturday I felt good, despite not sleeping well on Friday night. Sunday I started to drag, Monday I was super tired, and Tuesday I was dragging again; on those days I'm useless after dinner. Wednesday was better, but I still felt done by dinner time. Today, Thursday, I hope I will get a good day in before starting a new cycle tomorrow.
Friday, October 25, 2019
10/25/19: Chemo Cycle #4 of 12 + (9 Weeks Post-DMX) Physical Therapy Appointment #5 + A Stitch is Poking Out
Last night I discovered a little pokey thing sticking out of one of my incisions! It's tiny, I can't actually see it, but it feels like a tiny fishing wire. Thanks to some helpful posts I saw in Facebook support groups, I suspected it was a stitch sticking out, but wasn't sure what to do about it. I called the Breast Center this morning, but no one answered. I left a message, and told them I'd be in the Cancer Center later today.
Today was the first time a friend drove me to chemo instead of Ken. Ken is able to take off as much time as he needs, but practically speaking, it's difficult to juggle his lesson planning if he misses too many classes. I'm still hopeful that I may be able to drive myself eventually, but in the meantime, it's super helpful to have friends who have offered to drive.
I am pretty bad at asking for help. I just don't like inconveniencing other people. And this is a big inconvenience, potentially taking several hours. But as my infusion nurse pointed out today, if it's something I would do for someone else, then it's okay to let someone else do the same for me.
The friend who drove me today is one of my dearest friends. It was actually really fun spending the day with her. I mean, I would call it a pleasant way to pass the time, if only I wasn't getting cancer treatment at the same time. Hahahaha.
Ideally, my appointment in the infusion room would be 15 minutes after my port access appointment, so I can go directly from one appointment to the other without delay. That has pretty much been the case up until today. Today my 1:00 PM infusion appointment was 45 minutes after my 12:15 PM port access appointment, and all 10 infusion bays were occupied when we arrived. There's a small waiting area, and we had plenty of time to chat! We were given menus to order our lunches while we waited.
Also, my infusion nurse used this time to ask me about my side effects, so we could jump right to the meds when I got to my bay. I said I seem to always feel fine on Saturdays (day 2), and she said that's because of the Decadron steroid; it takes a few days to wear off.
I told her about the blood in my stuffy/runny nose, and she said that was not surprising if my platelet count goes low. (My platelet count has been on the low side, but still in the normal range.) If my nose feels irritated or dry, she said it might help to put a humidifer in my bedroom.
I also told her about the tiny pokey thing. She said it's probably a stitch, and she would consult with another nurse who previously worked in the Breast Center.
Once I got assigned to a bay, I started the pre-meds around 1:30. The regimen was the same as last time.
I got Herceptin starting at 1:45, then Taxol starting at 2:15.
During the Taxol, my physical therapist came in, and my friend stepped out and went back to the waiting area. The physical therapist worked on my cording while talking to me about ways to manage my tiredness. She referred to cancer-related fatigue and emphasized the importance of getting my heart rate up. Like if I take a nap during the day, I should get my heart rate up for a few minutes afterwards; I could go up and down the stairs a few times, or even just swing my arms around for a while. She reminded me that my walking should be "moderate" exercise, a brisk pace while still being able to carry on a conversation; it's all about the heart rate.
She also said I can start massaging my incisions to help break up the scar tissue, which can help make scars less noticeable. At this point, most (but not all) of the surgical glue and scabbing have come off, exposing the pink scars underneath. She showed me how to very gently massage my scars, basically the "vertical" and "circle" methods described in this "Managing Your Scar" document from the Moffitt Cancer Center that I found online. But my physical therapist said not to use lotion while massaging for now because it's important to maintain the friction between my fingers and the scar. I didn't think to ask if I should use any lotions otherwise.
Finally, I asked the physical therapist about the pokey thing in my incision. She didn't look at it, but she said it sounded just like a stitch. She said she's seen it a few times, and the first time she encountered it, she was advised by a nurse to recommend applying triple antibiotic ointment (besides preventing infection, it helps to soften the stitch), and covering it with a band-aid to keep the ointment in place.
I finished the Taxol at 3:15. The infusion nurse gave me my blood work report (nothing remarkable this time), and also took a look at my pokey thing. She confirmed it's a dissolveable stitch, and the other nurse who had worked in the Breast Center had advised her to snip it as close to the skin as possible! It was really tiny. She did the best she could, and now I can only feel the stitch if I run my finger over it in one particular direction. She said to use the triple antibiotic ointment and band-aid at night when sleeping.
We left around 3:30, so today's appointments were about 3 1/2 hours total, not including driving time.
Today was the first time a friend drove me to chemo instead of Ken. Ken is able to take off as much time as he needs, but practically speaking, it's difficult to juggle his lesson planning if he misses too many classes. I'm still hopeful that I may be able to drive myself eventually, but in the meantime, it's super helpful to have friends who have offered to drive.
I am pretty bad at asking for help. I just don't like inconveniencing other people. And this is a big inconvenience, potentially taking several hours. But as my infusion nurse pointed out today, if it's something I would do for someone else, then it's okay to let someone else do the same for me.
The friend who drove me today is one of my dearest friends. It was actually really fun spending the day with her. I mean, I would call it a pleasant way to pass the time, if only I wasn't getting cancer treatment at the same time. Hahahaha.
Ideally, my appointment in the infusion room would be 15 minutes after my port access appointment, so I can go directly from one appointment to the other without delay. That has pretty much been the case up until today. Today my 1:00 PM infusion appointment was 45 minutes after my 12:15 PM port access appointment, and all 10 infusion bays were occupied when we arrived. There's a small waiting area, and we had plenty of time to chat! We were given menus to order our lunches while we waited.
Also, my infusion nurse used this time to ask me about my side effects, so we could jump right to the meds when I got to my bay. I said I seem to always feel fine on Saturdays (day 2), and she said that's because of the Decadron steroid; it takes a few days to wear off.
I told her about the blood in my stuffy/runny nose, and she said that was not surprising if my platelet count goes low. (My platelet count has been on the low side, but still in the normal range.) If my nose feels irritated or dry, she said it might help to put a humidifer in my bedroom.
I also told her about the tiny pokey thing. She said it's probably a stitch, and she would consult with another nurse who previously worked in the Breast Center.
Once I got assigned to a bay, I started the pre-meds around 1:30. The regimen was the same as last time.
I got Herceptin starting at 1:45, then Taxol starting at 2:15.
During the Taxol, my physical therapist came in, and my friend stepped out and went back to the waiting area. The physical therapist worked on my cording while talking to me about ways to manage my tiredness. She referred to cancer-related fatigue and emphasized the importance of getting my heart rate up. Like if I take a nap during the day, I should get my heart rate up for a few minutes afterwards; I could go up and down the stairs a few times, or even just swing my arms around for a while. She reminded me that my walking should be "moderate" exercise, a brisk pace while still being able to carry on a conversation; it's all about the heart rate.
She also said I can start massaging my incisions to help break up the scar tissue, which can help make scars less noticeable. At this point, most (but not all) of the surgical glue and scabbing have come off, exposing the pink scars underneath. She showed me how to very gently massage my scars, basically the "vertical" and "circle" methods described in this "Managing Your Scar" document from the Moffitt Cancer Center that I found online. But my physical therapist said not to use lotion while massaging for now because it's important to maintain the friction between my fingers and the scar. I didn't think to ask if I should use any lotions otherwise.
Finally, I asked the physical therapist about the pokey thing in my incision. She didn't look at it, but she said it sounded just like a stitch. She said she's seen it a few times, and the first time she encountered it, she was advised by a nurse to recommend applying triple antibiotic ointment (besides preventing infection, it helps to soften the stitch), and covering it with a band-aid to keep the ointment in place.
I finished the Taxol at 3:15. The infusion nurse gave me my blood work report (nothing remarkable this time), and also took a look at my pokey thing. She confirmed it's a dissolveable stitch, and the other nurse who had worked in the Breast Center had advised her to snip it as close to the skin as possible! It was really tiny. She did the best she could, and now I can only feel the stitch if I run my finger over it in one particular direction. She said to use the triple antibiotic ointment and band-aid at night when sleeping.
We left around 3:30, so today's appointments were about 3 1/2 hours total, not including driving time.
Thursday, October 24, 2019
10/24/19: Cycle 3 Side Effects
I guess the loratadine does seem to help with the dry cough. I mean, I'm taking loratadine daily, and I didn't have the dry cough this week.
The weird problem I had focusing my eyes last Monday has persisted, though to a lesser extent. It was definitely the most pronounced that first day, but I do still find myself having trouble clearly seeing things that are in a sort of middle distance, like a clock across the room. None of the printed handouts that I got from my nurses mention eye problems, but other sources say blurred vision can be a side effect of Taxol.
I'm breaking out, which is kind of upsetting, because it's so visible. It's not just my face, either; it's behind my ears and even on my scalp, I think. Again, none of the printed handouts mention acne, but sources online list it as a possible side effect of both Herceptin and Lupron. I wonder why there is such variability in the side effects listed from different sources.
My whole scalp, actually, feels sensitive; I need to be careful when I'm brushing my hair, not to scrape the hairbrush against my head too much, or it hurts. I assume this is related to the Taxol affecting hair follicles.
I'm sleeping well, eating well, exercising and staying active, yet I still feel like I'm dragging. And I have this mild headache that is just sort of in the background. I don't think I would call it cancer-related fatigue at this point, but it is weird feeling tired all the time.
I'm thankful not to be experiencing any major side effects (yet), but all the minor ones are starting to add up...
Day 1
The weird problem I had focusing my eyes last Monday has persisted, though to a lesser extent. It was definitely the most pronounced that first day, but I do still find myself having trouble clearly seeing things that are in a sort of middle distance, like a clock across the room. None of the printed handouts that I got from my nurses mention eye problems, but other sources say blurred vision can be a side effect of Taxol.
I'm breaking out, which is kind of upsetting, because it's so visible. It's not just my face, either; it's behind my ears and even on my scalp, I think. Again, none of the printed handouts mention acne, but sources online list it as a possible side effect of both Herceptin and Lupron. I wonder why there is such variability in the side effects listed from different sources.
My whole scalp, actually, feels sensitive; I need to be careful when I'm brushing my hair, not to scrape the hairbrush against my head too much, or it hurts. I assume this is related to the Taxol affecting hair follicles.
I'm sleeping well, eating well, exercising and staying active, yet I still feel like I'm dragging. And I have this mild headache that is just sort of in the background. I don't think I would call it cancer-related fatigue at this point, but it is weird feeling tired all the time.
I'm thankful not to be experiencing any major side effects (yet), but all the minor ones are starting to add up...
Day 1
Once again, the dry mouth started soon after I got home.
Day 3
Interestingly, my day 3 side effects seem to be pretty consistent so far.
I woke up with a scratchy throat and a stuffy nose. As before, it didn't persist; I just drank some water and blew my nose, and that was it. I also had tingly toes, and a bit of diarrhea.
Despite a really good night's sleep, I felt tired. I remained active throughout the day, but I just felt like I was kind of dragging.
Day 4
Again, I got a good night's sleep, yet I still felt really tired. Took my walk and went grocery shopping, then needed a nap after lunch! By then I had a scratchy throat, slightly productive cough, headache, and low-grade fever of 99.5 F. Some of that may be related to the flu shot I got, but anyway I went to bed right after dinner.
I also had an occasional stuffy/runny nose, but more interestingly, I started noticing that any time I blow my nose, there's a little bit of blood on the tissue.
Day 5
Another good night's sleep, and thankfully all the cold-like symptoms were gone, except the headache, which continues to linger. The headache could be from either the Herceptin or the Lupron. Or maybe it's from walking around with blurry vision all the time. Ugh. Still had that dragging feeling for most of the day, and I went to bed early again.
Day 3
Interestingly, my day 3 side effects seem to be pretty consistent so far.
I woke up with a scratchy throat and a stuffy nose. As before, it didn't persist; I just drank some water and blew my nose, and that was it. I also had tingly toes, and a bit of diarrhea.
Despite a really good night's sleep, I felt tired. I remained active throughout the day, but I just felt like I was kind of dragging.
Day 4
Again, I got a good night's sleep, yet I still felt really tired. Took my walk and went grocery shopping, then needed a nap after lunch! By then I had a scratchy throat, slightly productive cough, headache, and low-grade fever of 99.5 F. Some of that may be related to the flu shot I got, but anyway I went to bed right after dinner.
I also had an occasional stuffy/runny nose, but more interestingly, I started noticing that any time I blow my nose, there's a little bit of blood on the tissue.
Day 5
Another good night's sleep, and thankfully all the cold-like symptoms were gone, except the headache, which continues to linger. The headache could be from either the Herceptin or the Lupron. Or maybe it's from walking around with blurry vision all the time. Ugh. Still had that dragging feeling for most of the day, and I went to bed early again.
Saturday, October 19, 2019
10/18/19: I Picked Up a Prescription + I Checked My Insurance Claims Online
Interestingly, the pharmacy did fill my prescription for loratadine (which is generic Claritin), but insurance doesn't cover it, presumably because it's available over the counter. But, the full price of the generic from the pharmacy is still cheaper than the cost of the same number of tablets of Claritin ($25.99 at CVS) or the CVS brand loratadine ($20.49).
10/11/19: Chemotherapy Cycle #2 (Including Blood Work): $6,999.06 (Covered by Insurance)
10/18/19: Loratadine Prescription: $9.07 (Out-of-Pocket Expense)
Total cost to date: $90,743.44
With insurance, cost to me: $4,202.23
10/11/19: Chemotherapy Cycle #2 (Including Blood Work): $6,999.06 (Covered by Insurance)
10/18/19: Loratadine Prescription: $9.07 (Out-of-Pocket Expense)
Total cost to date: $90,743.44
With insurance, cost to me: $4,202.23
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.
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.
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.
Thursday, October 17, 2019
10/17/19: Cycle 2 Side Effects
So far, so good. Two weeks in, and I've only experienced mild side effects. I'm trying to walk at least 30 minutes every day except infusion day - as long as the weather and my schedule allow it - and I'm drinking at least 64 oz. of water a day. Still, I'm guessing the biggest factor is the fact that my regimen really is "chemo lite" (a low dose of just 1 chemo drug).
Day 1
Same as last week, the dry mouth started soon after I got home. (This week, though, the dry mouth did not progress to that acidic feeling.)
I continued to have a sporadic dry cough, but it wasn't as bad as last week. At first it seemed to go away, actually; it returned on Day 3, and then diminished as the week went on.
I had a really poor night's sleep. It's not unusual for me to wake up in the middle of the night (especially to pee), and then have trouble falling back asleep, but my Fitbit says I got less than 4 hours total, which is unusual. Difficulty sleeping is listed as a side effect of Decadron, the steroid pre-med.
Day 2
I had itchy thumbs, but only very briefly.
Day 3
I woke up with a stuffy nose.
I also had some tingly toes and itchy fingers. These sensations came and went, lasting only a short while when they occurred.
Sorry for the TMI, but I had a bit of diarrhea, which is listed as a possible side effect for both Taxol and Herceptin.
Around mid-afternoon, I started feeling super tired. I thought it might just be the lack of sleep catching up to me, but my whole body felt tired, even kind of weak. I just wanted to lie down and sleep. I suppose that counts as "fatigue"? That night I slept a ton; according to Fitbit, I slept a couple more hours than usual.
Day 4
Weirdly, I felt like I had a hard time focusing my eyes all day. Maybe it was just a part of being tired? I had taken a walk in the morning, and it was a very sunny day. Something tickled my memory, and I checked the handout I have on Taxol; it says the drug "will make you sensitive to sunlight. You must wear sunglasses when outside, and avoid sun exposure." Aahhh! Oops... I guess the lack of sunglasses really affected my eyes!? I just happened to wear long sleeves and long pants because of the cool temperature. I'll keep my sunglasses and a hat handy from now on.
I also had a little tingling in my fingers, and an occasional runny nose.
Day 1
Same as last week, the dry mouth started soon after I got home. (This week, though, the dry mouth did not progress to that acidic feeling.)
I continued to have a sporadic dry cough, but it wasn't as bad as last week. At first it seemed to go away, actually; it returned on Day 3, and then diminished as the week went on.
I had a really poor night's sleep. It's not unusual for me to wake up in the middle of the night (especially to pee), and then have trouble falling back asleep, but my Fitbit says I got less than 4 hours total, which is unusual. Difficulty sleeping is listed as a side effect of Decadron, the steroid pre-med.
Day 2
I had itchy thumbs, but only very briefly.
Day 3
I woke up with a stuffy nose.
I also had some tingly toes and itchy fingers. These sensations came and went, lasting only a short while when they occurred.
Sorry for the TMI, but I had a bit of diarrhea, which is listed as a possible side effect for both Taxol and Herceptin.
Around mid-afternoon, I started feeling super tired. I thought it might just be the lack of sleep catching up to me, but my whole body felt tired, even kind of weak. I just wanted to lie down and sleep. I suppose that counts as "fatigue"? That night I slept a ton; according to Fitbit, I slept a couple more hours than usual.
Day 4
Weirdly, I felt like I had a hard time focusing my eyes all day. Maybe it was just a part of being tired? I had taken a walk in the morning, and it was a very sunny day. Something tickled my memory, and I checked the handout I have on Taxol; it says the drug "will make you sensitive to sunlight. You must wear sunglasses when outside, and avoid sun exposure." Aahhh! Oops... I guess the lack of sunglasses really affected my eyes!? I just happened to wear long sleeves and long pants because of the cool temperature. I'll keep my sunglasses and a hat handy from now on.
I also had a little tingling in my fingers, and an occasional runny nose.
Wednesday, October 16, 2019
(Book Review) Her-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer by Robert Bazell
A made-for-TV movie called Living Proof came up in one of the Facebook support groups. Once I realized the movie was based on a book, I figured I'd read the book first. (Now that I've finished the book, I'm looking forward to getting the movie from our local library network!) Since I'm HER2-positive and currently on Herceptin, this book is personal, and I suspect my 5-star rating is a bit inflated. Here's the review I posted on Goodreads.
I first read about the dramatic story behind Herceptin in The Emperor of All Maladies: A Biography of Cancer, a sweeping biography of cancer that includes Herceptin as one of many major developments in cancer research. When I learned of a book that dives in deep and provides all the fascinating details of Herceptin's own biography, I jumped to read it.
This story has all the players you might expect, and more. There are academic researchers, oncologists, and biotechnology executives; insurance companies, government agencies, Hollywood philanthropists, and activists. There are missed opportunities, serendipitous encounters, and determined individuals with unrelenting perseverence.
The author, Robert Bazell, interweaves the story of Herceptin with stories of women with breast cancer who helped make the drug available by participating in clinical trials or by advocating for compassionate access before it was FDA-approved. Bazell provides important facts about cancer and cancer research alongside candid accounts of the reality of cancer treatment and recurrence. There is poignancy and meaning in each woman's story.
For me, this book is personal, so maybe my rating is inflated. I was diagnosed with a HER2-positive breast cancer and am currently receiving targeted therapy with Herceptin. I am keenly aware that if I had been diagnosed 25 years earlier, my prognosis would very likely have been much more grim. I am deeply indebted to every individual who believed that Herceptin would save lives, and who persisted despite obstacles and set-backs. I feel sincere gratitude towards each woman whose participation in a clinical trial helped bring the drug to market.
Finally, this book reaffirmed my belief that health care and pharmaceuticals should not be for-profit industries. I am horrified to think of how many potentially life-saving drugs aren't under development because corporate executives don't see a path to profit.
I first read about the dramatic story behind Herceptin in The Emperor of All Maladies: A Biography of Cancer, a sweeping biography of cancer that includes Herceptin as one of many major developments in cancer research. When I learned of a book that dives in deep and provides all the fascinating details of Herceptin's own biography, I jumped to read it.
This story has all the players you might expect, and more. There are academic researchers, oncologists, and biotechnology executives; insurance companies, government agencies, Hollywood philanthropists, and activists. There are missed opportunities, serendipitous encounters, and determined individuals with unrelenting perseverence.
The author, Robert Bazell, interweaves the story of Herceptin with stories of women with breast cancer who helped make the drug available by participating in clinical trials or by advocating for compassionate access before it was FDA-approved. Bazell provides important facts about cancer and cancer research alongside candid accounts of the reality of cancer treatment and recurrence. There is poignancy and meaning in each woman's story.
For me, this book is personal, so maybe my rating is inflated. I was diagnosed with a HER2-positive breast cancer and am currently receiving targeted therapy with Herceptin. I am keenly aware that if I had been diagnosed 25 years earlier, my prognosis would very likely have been much more grim. I am deeply indebted to every individual who believed that Herceptin would save lives, and who persisted despite obstacles and set-backs. I feel sincere gratitude towards each woman whose participation in a clinical trial helped bring the drug to market.
Finally, this book reaffirmed my belief that health care and pharmaceuticals should not be for-profit industries. I am horrified to think of how many potentially life-saving drugs aren't under development because corporate executives don't see a path to profit.
Tuesday, October 15, 2019
10/15/19: I Called My Physical Therapist
I decided to ask my physical therapist if I should have another appointment so she can look at my cording. She scheduled me for a time slot during my chemo on Friday, so she'll just come to my bay in the infusion room.
With all the extra stretching, the cord seems like it's improving. At this point, I can't see the cord unless I raise my arm up over my head, and I can't feel that thin, taut wire under my skin along my arm; I can still feel it in my armpit, though.
Here's a photo of the cord in my arm. It's kind of subtle, but it's a straight vertical line starting in the middle of the photo, extending downward.
Saturday, October 12, 2019
10/12/19: I Checked My Insurance Claims Online
With payment of the last bill, I met my insurance deductible, so all my remaining medical claims for the coverage year should be paid in full by my insurance.
I don't think the insurance company sends me any statements when I don't have anything to pay, so I logged into my online account to see what has been charged.
Like I mentioned before, I don't fully understand everything that's posted in my online account, especially in the claim detail pages. But the "Recent Activity" summary page lists two numbers, a "Claim Total" amount and a "You Pay" amount. I'm using the "Claim Total" in my "Total cost to date" tally. The "You Pay" amount for all these claims is $0.
8/23/19: Surgery Breast Surgeon: $9,754.00
8/23/19: Surgery Pathologist: $1,553.00
8/23/19: Surgery Hospital (Incuding Pharmacy, Anesthesiology, Radiology, Pathology): $18,716.15
9/17/19: Oncotype DX Testing: $4,620.00
9/18/19: Physical Therapy Appointment #1: $492.00
9/19/19: Medical Oncologist Appointment: $552.00
9/19/19: Medical Oncologist Hospital (Including Blood Draw/Lab Work and Appointment): $842.00
9/23/19: Physical Therapy Appointment #2: $250.00
9/24/19: Hospital (Blood Draw/Lab Work): $82.00
9/25/19: Port Placement Hospital: $5,789.98
9/25/19: Port Placement Surgeon: $1,162.00
9/26/19: Port Check Appointment (Bruise): $161.00
9/26/19: Echocardiogram Hospital: $1,133.00
9/26/19: Echocardiogram Cardiologist: $240.00
10/2/19: Physical Therapy Appointment #3: $375.00
10/3/19: Hospital (Including Blood Draw/Lab Work): $737.00
10/4/19: Chemotherapy Cycle #1 (Including Lupron): $11,601.92
Sub-total: $58,061.05
Total cost to date: $83,735.31
With insurance, cost to me: $4,193.16
I don't think the insurance company sends me any statements when I don't have anything to pay, so I logged into my online account to see what has been charged.
Like I mentioned before, I don't fully understand everything that's posted in my online account, especially in the claim detail pages. But the "Recent Activity" summary page lists two numbers, a "Claim Total" amount and a "You Pay" amount. I'm using the "Claim Total" in my "Total cost to date" tally. The "You Pay" amount for all these claims is $0.
8/23/19: Surgery Breast Surgeon: $9,754.00
8/23/19: Surgery Pathologist: $1,553.00
8/23/19: Surgery Hospital (Incuding Pharmacy, Anesthesiology, Radiology, Pathology): $18,716.15
9/17/19: Oncotype DX Testing: $4,620.00
9/18/19: Physical Therapy Appointment #1: $492.00
9/19/19: Medical Oncologist Appointment: $552.00
9/19/19: Medical Oncologist Hospital (Including Blood Draw/Lab Work and Appointment): $842.00
9/23/19: Physical Therapy Appointment #2: $250.00
9/24/19: Hospital (Blood Draw/Lab Work): $82.00
9/25/19: Port Placement Hospital: $5,789.98
9/25/19: Port Placement Surgeon: $1,162.00
9/26/19: Port Check Appointment (Bruise): $161.00
9/26/19: Echocardiogram Hospital: $1,133.00
9/26/19: Echocardiogram Cardiologist: $240.00
10/2/19: Physical Therapy Appointment #3: $375.00
10/3/19: Hospital (Including Blood Draw/Lab Work): $737.00
10/4/19: Chemotherapy Cycle #1 (Including Lupron): $11,601.92
Sub-total: $58,061.05
Total cost to date: $83,735.31
With insurance, cost to me: $4,193.16
10/12/19: I Got Billed Again For Surgery
8/23/19: Surgery Anesthesiologist: $3,540.00
With insurance, I paid: $2,165.03
Total cost to date: $25,674.26
With insurance, cost to me: $4,193.16
With insurance, I paid: $2,165.03
Total cost to date: $25,674.26
With insurance, cost to me: $4,193.16
Friday, October 11, 2019
10/11/19: (7 Weeks Post-DMX) I'm Doing My Physical Therapy Exercises
Since surgery, I've had this "iron bra" feeling around my chest; it feels like I'm wearing a compression bra, even though I'm not. A lot of women in Facebook support groups complain that it's uncomfortable, but it doesn't really bother me so much. It's just an unusual feeling when I remember that I'm not actually wearing tight clothing.
Other than the tightness, my whole chest area had been numb, but lately I've noticed a bit of feeling coming back, including in my right underarm, I think. It's hard to describe, except to say that it feels not just tight and numb anymore. It feels kind of weird. The seat belt especially feels weird when it presses against my chest. I've settled on using two seat belt pillows, a larger one positioned directly over my chest area to cushion it, and if I'm driving, a smaller one positioned on my left shoulder to lift the seat belt entirely away from my port.
The actual act of driving is almost back to normal. I can still feel some tightness when turning the wheel or turning my body to look behind me, but I don't think my driving is hindered. At this point, I'm pretty much as functional as I was before surgery; I can do all the usual household tasks like cooking, washing dishes, and doing laundry. The break from chores was nice while it lasted. Haha.
When I'm doing my physical therapy exercises, I'm starting to feel muscles in my chest being pulled that I hadn't felt since surgery. I hope this means that the numbness is fading. Plus, my range of motion has improved a lot! I'm really pleased with the progress.
Meanwhile, though, the cording in my right underarm has gotten worse. I can now sometimes see and feel a cord extending halfway to my elbow. If I hold my right arm out to the side, at just the right angle, there's like a line where my skin looks indented, like there's a "cord" pulling on the skin from the inside. If I rub the line with my left hand, it feels like there's a very thin, taut wire just under the skin. It's not painful, but it's uncomfortable when I try to stretch and it restricts my range of motion.
I've since redoubled my efforts to do my physical therapy exercises, so I do them multiple times a day whenever I think of it. I think it may be helping. The cord already feels a little better than when I first noticed it had worsened (a couple days ago).
I'm a bit disappointed that my physical therapist hasn't stopped in during either of my first two chemo sessions, but maybe she figured I need time to adjust to the routine. I feel comfortable with my range of motion progress, but I think I'd like her to look at the cording. I'll see how things feel after this long weekend, and I'll think about calling for an appointment next week if necessary.
The actual act of driving is almost back to normal. I can still feel some tightness when turning the wheel or turning my body to look behind me, but I don't think my driving is hindered. At this point, I'm pretty much as functional as I was before surgery; I can do all the usual household tasks like cooking, washing dishes, and doing laundry. The break from chores was nice while it lasted. Haha.
When I'm doing my physical therapy exercises, I'm starting to feel muscles in my chest being pulled that I hadn't felt since surgery. I hope this means that the numbness is fading. Plus, my range of motion has improved a lot! I'm really pleased with the progress.
Meanwhile, though, the cording in my right underarm has gotten worse. I can now sometimes see and feel a cord extending halfway to my elbow. If I hold my right arm out to the side, at just the right angle, there's like a line where my skin looks indented, like there's a "cord" pulling on the skin from the inside. If I rub the line with my left hand, it feels like there's a very thin, taut wire just under the skin. It's not painful, but it's uncomfortable when I try to stretch and it restricts my range of motion.
I've since redoubled my efforts to do my physical therapy exercises, so I do them multiple times a day whenever I think of it. I think it may be helping. The cord already feels a little better than when I first noticed it had worsened (a couple days ago).
I'm a bit disappointed that my physical therapist hasn't stopped in during either of my first two chemo sessions, but maybe she figured I need time to adjust to the routine. I feel comfortable with my range of motion progress, but I think I'd like her to look at the cording. I'll see how things feel after this long weekend, and I'll think about calling for an appointment next week if necessary.
10/11/19: Chemo Cycle #2 of 12
Previously, in preparation for the port access, I pretty much slathered the numbing cream on my port rather generously. Today, I thought I'd try to use it a bit more sparingly. It still worked! I didn't feel the needle going in at all. Incidentally, I did feel the needle coming out (which I don't remember feeling last week), but still with a kind of dulled feeling. I wouldn't call it painful, just a very brief pricking feeling.
The port nurse "flushed" the port, and drew 2 vials of blood. She needed to draw a third, but the blood didn't fill the vial. She had me take some deep breaths, which can help reposition the port catheter inside the vein! Weird. She still couldn't draw any blood, and she said she could tell that the catheter was "up against the wall" of the vein. So she flushed the port again, had me take some more deep breaths, and also had me pull my shoulders back, and then she was able to get the third vial of blood.
Interestingly, the port nurse asked me if I had drunk "enough" water this morning. I did purposely drink 16 oz. before leaving the house, but maybe that wasn't enough. She said staying hydrated helps, and I should try to make sure I drink "enough" the evening before, too. I'm making sure to get at least 64 oz. a day of water, not including other liquids like soup or non-water beverages. I'll start paying particular attention to water intake the day before and the day of chemo.
The port nurse also commented that my port incision was healing nicely. I said it's kind of funny, my two major incisions from double mastectomy surgery were so clean and flat from day one, but the smaller port incision looks worse. She said the port surgeons just aren't as good at prioritizing the cosmetic outcome. Except this one surgeon, she named him (not the surgeon I had), and she said she could always tell when he was the surgeon because his work is so well done! Too bad I didn't get him. Ha. Anyway, she said my port incision still might look better when healed, I'll just have to wait and see. But if it bothers me, after it's fully healed, she recommended Mederma to lessen the scar's appearance.
With my port accessed, we headed upstairs to the infusion room. Ken came with me again to today's appointment. The overall time was less than last week's by over an hour; Ken didn't have time to finish his grading!
I got my vitals, settled into my bay, and the nurse came in around 12:00 to start my infusions. She asked me about any side effects, and seemed to find the cough a little concerning, enough to call my medical oncologist so she's aware. She said we'd "keep an eye on it". Herceptin can weaken the heart, so she asked me if I had any other symptoms like shortness of breath or trouble going up stairs; I haven't. She said to be especially vigilant about signs of infection, to stay away from sick people, and to call at the first sign of something not feeling right. A temperature of 100.4 is considered a fever, but she said to call even if it just gets over 100. The nurse confirmed I should get a flu shot, but she said we'd do it next week. For now they want to watch the cough, and don't want to introduce too many variables.
Since I responded well to treatment last week, we were able to ease up on some of the pre-meds. No Tylenol. I took the steroid (name brand Decadron) by mouth instead of via IV through the port; that shaved some time off our visit. I still got Benadryl by port but it was half the dose of last week. And the Pepcid by port was the same as last week. The Benadryl still made me feel kind of loopy, but not nearly as bad as last time!
My primary nurse was the same nurse as last week, but other nurses sometimes stepped in as needed. The pre-meds took about 45 minutes. Each time an IV drug stops flowing, the IV machine beeps, and a nurse comes to switch out the IV pouches if the drug is finished. Sometimes the machine beeps, but there is still medicine left in the pouch, so then the nurse jiggles the pouch or fusses with the IV tubing, to allow the drug to finish for real.
After the pre-meds finished, we had to wait for the Taxol and Herceptin to arrive from the pharmacy. I started the Herceptin at 1:00, and it was delivered over 30 minutes, instead of the 90 minutes that was needed for the initial treatment. That cut down another hour from our total time.
At 1:30 I started the Taxol, which takes an hour. Every time a nurse administers the Taxol or Herceptin, they ask for a "check", and another nurse comes over. I give my name and birth date, they match it with my wrist band, and then one nurse reads off my medical record number while the other nurse confirms it. Then one nurse reads the same information off the drug pouch and the other double-checks it against the paperwork. They also read off the drug's expiration date, and I think both drugs expire in like 12 hours or something. I thought that was interesting.
Once the Taxol was finished, the nurse de-accessed my port, gave me my blood lab results that I requested, and we left at 2:45. All told, it was less than 3 hours to administer the medicines, but just over 3 hours total including the port access and blood draw.
I find the blood lab results fascinating. There's a lot more data than is explained in that link, so I don't understand it all. But a lot of numbers went down, some went up, and a couple were just on the cusp of the normal range. The only number that was squarely outside normal range, on the high side, was my "Im Gran" number. I think that's a count of "immature granulocytes", which I am learning are immature white blood cells, so they are involved in fighting off infections. I don't feel unwell, but maybe my body is already fighting off an infection, or is getting ready for a fight? I guess it just reinforces how I need to be vigilant about washing my hands and avoiding sick people.
Speaking of feeling well, like last week, I don't really feel any side effects tonight, except minor things like a dry mouth and that little cough. It's possible the steroid pre-med is giving me an energy boost, but I'm usually a night owl anyway, so it's hard to tell. It's nice that at least so far, we have been able to keep up our Friday Family Fun Night tradition of playing a board game or watching a movie.
The port nurse "flushed" the port, and drew 2 vials of blood. She needed to draw a third, but the blood didn't fill the vial. She had me take some deep breaths, which can help reposition the port catheter inside the vein! Weird. She still couldn't draw any blood, and she said she could tell that the catheter was "up against the wall" of the vein. So she flushed the port again, had me take some more deep breaths, and also had me pull my shoulders back, and then she was able to get the third vial of blood.
Interestingly, the port nurse asked me if I had drunk "enough" water this morning. I did purposely drink 16 oz. before leaving the house, but maybe that wasn't enough. She said staying hydrated helps, and I should try to make sure I drink "enough" the evening before, too. I'm making sure to get at least 64 oz. a day of water, not including other liquids like soup or non-water beverages. I'll start paying particular attention to water intake the day before and the day of chemo.
The port nurse also commented that my port incision was healing nicely. I said it's kind of funny, my two major incisions from double mastectomy surgery were so clean and flat from day one, but the smaller port incision looks worse. She said the port surgeons just aren't as good at prioritizing the cosmetic outcome. Except this one surgeon, she named him (not the surgeon I had), and she said she could always tell when he was the surgeon because his work is so well done! Too bad I didn't get him. Ha. Anyway, she said my port incision still might look better when healed, I'll just have to wait and see. But if it bothers me, after it's fully healed, she recommended Mederma to lessen the scar's appearance.
With my port accessed, we headed upstairs to the infusion room. Ken came with me again to today's appointment. The overall time was less than last week's by over an hour; Ken didn't have time to finish his grading!
I got my vitals, settled into my bay, and the nurse came in around 12:00 to start my infusions. She asked me about any side effects, and seemed to find the cough a little concerning, enough to call my medical oncologist so she's aware. She said we'd "keep an eye on it". Herceptin can weaken the heart, so she asked me if I had any other symptoms like shortness of breath or trouble going up stairs; I haven't. She said to be especially vigilant about signs of infection, to stay away from sick people, and to call at the first sign of something not feeling right. A temperature of 100.4 is considered a fever, but she said to call even if it just gets over 100. The nurse confirmed I should get a flu shot, but she said we'd do it next week. For now they want to watch the cough, and don't want to introduce too many variables.
Since I responded well to treatment last week, we were able to ease up on some of the pre-meds. No Tylenol. I took the steroid (name brand Decadron) by mouth instead of via IV through the port; that shaved some time off our visit. I still got Benadryl by port but it was half the dose of last week. And the Pepcid by port was the same as last week. The Benadryl still made me feel kind of loopy, but not nearly as bad as last time!
My primary nurse was the same nurse as last week, but other nurses sometimes stepped in as needed. The pre-meds took about 45 minutes. Each time an IV drug stops flowing, the IV machine beeps, and a nurse comes to switch out the IV pouches if the drug is finished. Sometimes the machine beeps, but there is still medicine left in the pouch, so then the nurse jiggles the pouch or fusses with the IV tubing, to allow the drug to finish for real.
After the pre-meds finished, we had to wait for the Taxol and Herceptin to arrive from the pharmacy. I started the Herceptin at 1:00, and it was delivered over 30 minutes, instead of the 90 minutes that was needed for the initial treatment. That cut down another hour from our total time.
At 1:30 I started the Taxol, which takes an hour. Every time a nurse administers the Taxol or Herceptin, they ask for a "check", and another nurse comes over. I give my name and birth date, they match it with my wrist band, and then one nurse reads off my medical record number while the other nurse confirms it. Then one nurse reads the same information off the drug pouch and the other double-checks it against the paperwork. They also read off the drug's expiration date, and I think both drugs expire in like 12 hours or something. I thought that was interesting.
Once the Taxol was finished, the nurse de-accessed my port, gave me my blood lab results that I requested, and we left at 2:45. All told, it was less than 3 hours to administer the medicines, but just over 3 hours total including the port access and blood draw.
I find the blood lab results fascinating. There's a lot more data than is explained in that link, so I don't understand it all. But a lot of numbers went down, some went up, and a couple were just on the cusp of the normal range. The only number that was squarely outside normal range, on the high side, was my "Im Gran" number. I think that's a count of "immature granulocytes", which I am learning are immature white blood cells, so they are involved in fighting off infections. I don't feel unwell, but maybe my body is already fighting off an infection, or is getting ready for a fight? I guess it just reinforces how I need to be vigilant about washing my hands and avoiding sick people.
Speaking of feeling well, like last week, I don't really feel any side effects tonight, except minor things like a dry mouth and that little cough. It's possible the steroid pre-med is giving me an energy boost, but I'm usually a night owl anyway, so it's hard to tell. It's nice that at least so far, we have been able to keep up our Friday Family Fun Night tradition of playing a board game or watching a movie.
Tuesday, October 8, 2019
10/8/19: Cycle 1 Side Effects
The oncology nurses gave me informational printouts for Taxol, Herceptin, and Lupron that list possible side effects for each. From everything I've gathered, the first chemo treatment tends to be the easiest; it's the accumulation of the drugs that precipitates severe side effects. I'm in good shape so far. This is what I've experienced.
Day 1
The night of treatment, I started having a dry mouth. It lasted a couple days, actually making it easier for me to meet my water drinking goals. Mouth sores are listed as a side effect of Taxol, so maybe the dry mouth goes with that.
Day 2
My butt was sore from the Lupron injection.
Towards the end of the day, I developed a sporadic cough, possibly a side effect of Herceptin. Mostly it's a dry cough, but not always.
Day 3
I woke up with a dry, scratchy throat and stuffy nose, but they didn't persist. Rhinitis and pharyngitis (cold symptoms) are listed as side effects of Herceptin.
Around mid-morning, my fingers and palms felt itchy, tingly, and a little numb. I figured this was peripheral neuropathy, a side effect of Taxol. It kind of came and went throughout the day, lasting for an hour or so at a time.
My mouth also started to feel kind of acidic, just this weird kind of sour-like feeling. So I made and started to use the mouth rinse recommended in the Taxol handout: 8 oz. of water with 1 teaspoon baking soda and 1 teaspoon salt. I rinse and gargle as needed; it helps.
Day 4
I felt just a little bit of tingliness in my toes. It passed after a little while.
Day 1
The night of treatment, I started having a dry mouth. It lasted a couple days, actually making it easier for me to meet my water drinking goals. Mouth sores are listed as a side effect of Taxol, so maybe the dry mouth goes with that.
Day 2
My butt was sore from the Lupron injection.
Towards the end of the day, I developed a sporadic cough, possibly a side effect of Herceptin. Mostly it's a dry cough, but not always.
Day 3
I woke up with a dry, scratchy throat and stuffy nose, but they didn't persist. Rhinitis and pharyngitis (cold symptoms) are listed as side effects of Herceptin.
Around mid-morning, my fingers and palms felt itchy, tingly, and a little numb. I figured this was peripheral neuropathy, a side effect of Taxol. It kind of came and went throughout the day, lasting for an hour or so at a time.
My mouth also started to feel kind of acidic, just this weird kind of sour-like feeling. So I made and started to use the mouth rinse recommended in the Taxol handout: 8 oz. of water with 1 teaspoon baking soda and 1 teaspoon salt. I rinse and gargle as needed; it helps.
Day 4
I felt just a little bit of tingliness in my toes. It passed after a little while.
10/8/19: OB/GYN Appointment
I made this appointment even before I was diagnosed because my PCP thought all my breast-related appointments were an indication of having an increased risk for breast cancer, and she recommended I talk to an OB/GYN about non-hormonal birth control methods. There is some evidence that using hormone-based birth control may be related to a slightly higher risk for breast cancer. Anyway, once I was diagnosed, my NP said I definitely shouldn't be taking hormonal birth control.
This is probably another TMI post, but there's a lot of important information I want to record.
Most interestingly, the OB/GYN did not feel that an oophorectomy (removal of ovaries) has any serious long-term side effects that I should worry about. I asked her about possible long-term risks, and she said the information I had all seemed tied to one study that is over 10 years old, so she didn't give it much merit.
She was so unconcerned about the risks of ovary removal that she said I could consider an oophorectomy as a means for birth control. The Lupron is supposed to put me into a chemically-induced menopause, so I asked if birth control is still necessary? She said it is, because the purpose of the Lupron itself is not birth control. Another option is a non-hormonal IUD, but she warned that having one might mask other bleeding symptoms that might result from the Tamoxifen; Tamoxifen can increase the risk for uterine cancer, and one of the earliest symptoms can be abnormal bleeding. Barrier methods (which is recommended during chemo) actually seem the least problematic.
She also said I might want to consider an oophorectomy to avoid the monthly Lupron injections. I had already seen in the Facebook support groups that women with strong ER-positive breast cancer do sometimes choose surgical menopause over chemically-induced menopause. I'm not sure if there's a benefit other than avoiding the inconvenience of monthly appointments. My medical oncologist didn't mention it, but I suspect that's because it's in the OB/GYN domain. I'm still concerned about long-term risks, but it's not something that needs to be decided any time soon. I can see how the Lupron goes, and can always elect for an oophorectomy later.
The OB/GYN further discussed ovary removal in the context of my genetic testing. Even though the VUS in my BRCA2 gene wasn't enough to justify ovary removal in the opinion of the genetics specialist, my OB/GYN seemed to lean towards being cautious, similar to my breast surgeon. She confirmed that ovarian cancer is hard to detect, having only non-specific symptoms, so removing the ovaries would make that one less thing to worry about. It seems kind of drastic to me, since I don't even know that I do have an increased risk for ovarian cancer, but I guess I "may".
Overall, she gave me the impression that removing my ovaries could have a number of benefits, and she didn't seem too concerned about any risks. She didn't go so far as to "suggest" it, but she gave me a lot to think about.
We also spent some time talking about symptoms of menopause, so I'll know what to expect. (I still can't believe I have to worry about menopause at age 43.) She said the average age when natural menopause starts is 51, and it's technically when periods have stopped for at least a year. Since the Lupron is a pre-menopausal treatment, I asked how will I know when I'm in natural menopause. The oncology nurse had said that a blood test could measure hormone levels, but the OB/GYN said it's hard to tell unless I stop taking Lupron for a period of time before getting tested.
This is probably another TMI post, but there's a lot of important information I want to record.
Most interestingly, the OB/GYN did not feel that an oophorectomy (removal of ovaries) has any serious long-term side effects that I should worry about. I asked her about possible long-term risks, and she said the information I had all seemed tied to one study that is over 10 years old, so she didn't give it much merit.
She was so unconcerned about the risks of ovary removal that she said I could consider an oophorectomy as a means for birth control. The Lupron is supposed to put me into a chemically-induced menopause, so I asked if birth control is still necessary? She said it is, because the purpose of the Lupron itself is not birth control. Another option is a non-hormonal IUD, but she warned that having one might mask other bleeding symptoms that might result from the Tamoxifen; Tamoxifen can increase the risk for uterine cancer, and one of the earliest symptoms can be abnormal bleeding. Barrier methods (which is recommended during chemo) actually seem the least problematic.
She also said I might want to consider an oophorectomy to avoid the monthly Lupron injections. I had already seen in the Facebook support groups that women with strong ER-positive breast cancer do sometimes choose surgical menopause over chemically-induced menopause. I'm not sure if there's a benefit other than avoiding the inconvenience of monthly appointments. My medical oncologist didn't mention it, but I suspect that's because it's in the OB/GYN domain. I'm still concerned about long-term risks, but it's not something that needs to be decided any time soon. I can see how the Lupron goes, and can always elect for an oophorectomy later.
The OB/GYN further discussed ovary removal in the context of my genetic testing. Even though the VUS in my BRCA2 gene wasn't enough to justify ovary removal in the opinion of the genetics specialist, my OB/GYN seemed to lean towards being cautious, similar to my breast surgeon. She confirmed that ovarian cancer is hard to detect, having only non-specific symptoms, so removing the ovaries would make that one less thing to worry about. It seems kind of drastic to me, since I don't even know that I do have an increased risk for ovarian cancer, but I guess I "may".
Overall, she gave me the impression that removing my ovaries could have a number of benefits, and she didn't seem too concerned about any risks. She didn't go so far as to "suggest" it, but she gave me a lot to think about.
We also spent some time talking about symptoms of menopause, so I'll know what to expect. (I still can't believe I have to worry about menopause at age 43.) She said the average age when natural menopause starts is 51, and it's technically when periods have stopped for at least a year. Since the Lupron is a pre-menopausal treatment, I asked how will I know when I'm in natural menopause. The oncology nurse had said that a blood test could measure hormone levels, but the OB/GYN said it's hard to tell unless I stop taking Lupron for a period of time before getting tested.
Friday, October 4, 2019
10/4/19: Chemo Cycle #1 of 12 + Lupron + Social Worker Visit
Warning: This post contains photos of my accessed port.
The actual process of receiving chemotherapy turned out to be pretty uneventful. That's good, because it means I didn't have any kind of allergic reaction to any of the drugs today. Ken came and stayed with me the whole time. He got a lot of grading done.
My physical therapist did not pop in, but the social worker did.
When we arrived at the Cancer Center, the familiar face at the reception desk recognized me and checked me in without asking my name. On the one hand, it's a little depressing that I am there so often that she knows who I am; but on the other hand, it definitely makes for a much more warm and welcoming experience.
I had a 10:30 appointment with the port nurse. She accessed my port in preparation for chemo, but did not draw blood today because she said they got all the lab work done yesterday. I had put the numbing cream on a little over an hour earlier, and it again worked like a charm; I didn't feel a thing when she inserted the needle. I'm a little curious to know how much it might hurt without the numbing cream, but the area is still bruised, and I guess that's not something I really need to find out. Haha.
We went upstairs to the infusion room. A medical assistant took my vitals (height, weight, blood pressure, oxygen, and temperature), gave me a tour of the facilities (there's a cabinet with warmed blankets, and a small kitchen with snacks and drinks and water), and brought me to my "bay" (a private curtained off area with infusion equipment, a recliner for me, two simpler chairs for company, and a TV).
Looking around, at first I thought I might be the youngest patient by a couple decades. But then I saw a young woman, maybe in her 20s, with an older couple I assume were her parents. It wasn't clear at first who the patient was, but later on I saw the couple sitting in guest chairs.
Around 11:00 my infusion nurse came in. The same nurse is listed on all my upcoming appointments that are already scheduled, but I don't think it's guaranteed that I'll always get the same nurse for future appointments. She was friendly and knowledgeable, maybe with a kind of business-like way about her. I wonder if sometimes, having that kind of demeanor is a conscious decision for someone who works with cancer patients all day.
We started with the pre-medications that the oncology nurse had told me about. First I took 2 Tylenol by mouth (to ward off fever), and then the infusion nurse delivered the pre-meds one by one via IV through the port. First the steroid (name brand Decadron), then the Benadryl, then the Pepcid.
Around 11:40, after I had just finished the Benadryl, the social worker came by. The infusion nurse told her my Benadryl was about to kick in, so I might be kind of out of it, but she knew I hadn't had any contact with the social worker yet, so it was still a good idea for us to meet when she had the time.
I'm glad the infusion nurse had given the social worker the heads up, because not 5 minutes into our conversation, I realized I was focusing really hard to understand what she was saying. When I opened my mouth to answer a question, I was surprised at how quiet my own voice was, and how slow my words were coming out! I felt kind of loopy, and it took a lot of effort to talk and stay awake. I am sure that if she hadn't been there talking to me, I would have fallen asleep!
Anyway, she was really nice, and she gave me information about a breast cancer support group that meets at the Cancer Center. I know that at least half a dozen friends of mine have mothers who had/have breast cancer, but I don't personally know anyone my age who has been diagnosed. I'd be interested in seeing if there are any women around my age in the support group, but the meeting times are actually pretty inconvenient for me, so I'll have to see if I can make it work.
We spent most of the time talking about how to talk to our kids about my cancer. She gave us some helpful resources, including a book list which might work well for our kids, since they are both avid readers. One really important piece of advice she gave us is to not assume that our kids are fine just because they aren't talking about it with us. We should make a point to check in with them at a time when they feel safe and comfortable, and give them opportunities to ask questions, so they know it's okay to talk about it.
Towards the end of the social worker's visit, just before 12:00, the last pre-med finished, and they started the Herceptin. This is the targeted therapy that they deliver in 90 minutes the first time to make sure it's well-tolerated. Since it went well today, in future visits they may be able to decrease the delivery time to 30 minutes.
After the Herceptin I got the Taxol, which takes 60 minutes to deliver. When the infusion nurse handled the Taxol, besides just putting on gloves, she also put on a protective gown, a precautionary measure because topical exposure is harmful. It seemed kind of funny because, gee, I'm getting that toxic drug pumped directly into my veins!
All this time, I was diligent about my water intake. One of the informational handouts I received on chemotherapy said to drink 2 to 3 quarts of water every day. That's a lot of water! I met the goal today, but it did mean having to pee a lot. I literally had to pee like every half an hour. The IV system can run on battery power, so I just walked the IV pole into the bathroom with me. I know this is no time to feel self-conscious, but I felt self-conscious wondering if everyone who could see me thought it was amusing or weird how frequently I was using the bathroom. Haha.
I should mention, too, that since we were in the infusion room during lunch hours, we both got free lunch! There was a menu from which we could order a soup or sandwich, fruit, chips, dessert, and a beverage. It was a nice perk.
I read a few pages of a book I brought, and nodded off here and there. A lot of the time I felt kind of foggy, so really couldn't do much but just sit and rest. I could hear people in other bays watching TV or talking with their support people. Maybe once I get used to the meds, I can use the time to read or play my online games, like Scrabble and Boggle and Candy Crush! They do have free wi-fi in the hospital.
The infusion nurse also said that if I handle the meds well, I might be able to drive myself to future treatments! That would be a huge help, if Ken doesn't have to take as much time off from work. Mostly they are worried about the Benadryl causing drowsiness, which would be dangerous if I drove myself. Today, I definitely felt out of it, and would not have been able to drive myself home safely. But if I handle the chemo drugs well, they might be able to reduce the pre-med doses, and I might be able to take some orally instead of through the port. We'll have to see how things go.
Around 2:30, the infusion nurse de-accessed my port.
The only thing left was to give me my Lupron injection, but we had to wait for it to get delivered from the pharmacy department. While we waited, the infusion nurse gave me my blood work report that I had requested, an informational handout about Lupron, a visit summary with future appointments, and a super helpful printout of guidance regarding when to use which medication, what to do if I develop particular symptoms, recommendations on how to maintain my health during chemo, and when to call the doctor.
The Lupron injection was just a quick shot in my butt. I'll be getting it every 4 weeks, and the infusion nurse said we would alternate which side to use for the shot.
We left the Cancer Center at 3:00. All told, it was almost exactly 4 1/2 hours, just as the oncology nurse had estimated.
So here's a photo of me in the infusion chair, next to my IV pole. And then a close-up of the accessed port, which is covered in protective dressing.
I might still post a photo of the bare port, if it ever calms down. Right now, the incision still looks raw, the area immediately surrounding the port is bruised, and the wider area is rashy with redness and bumps. I've taken photos for my own records, and they aren't pretty!
Back at home, the only thing I noticed is a bit of dry mouth, which I think is a side effect of the Taxol. That's just more reason to keep up with my water drinking!
Apparently a lot of chemo side effects tend to show up a day or two later, but the one that might come up on the day of treatment is that feeling of "being wired" due to the steroid pre-med. I wouldn't say I feel "wired" in a jittery way, but I am up at almost 11:00 PM on the day of treatment, so maybe that is something. (Though I am usually a night owl anyway.)
I was encouraged that the infusion nurse echoed the other oncology nurse and said that with my low dose of Taxol, the risk of nausea is low, especially because I did not get morning sickness when I was pregnant. She said women who had bad nausea during pregnancy tend to get nausea with chemo as well. I did get nausea, but not to the point of vomiting, and I seem to remember it being more like nausea triggered by specific smells and food, not necessarily like a stand-alone, all-present nausea. So I hope that counts for not being at a particularly high risk for nausea now, especially if I take care to stay hydrated, and am careful about what I eat.
The actual process of receiving chemotherapy turned out to be pretty uneventful. That's good, because it means I didn't have any kind of allergic reaction to any of the drugs today. Ken came and stayed with me the whole time. He got a lot of grading done.
My physical therapist did not pop in, but the social worker did.
When we arrived at the Cancer Center, the familiar face at the reception desk recognized me and checked me in without asking my name. On the one hand, it's a little depressing that I am there so often that she knows who I am; but on the other hand, it definitely makes for a much more warm and welcoming experience.
I had a 10:30 appointment with the port nurse. She accessed my port in preparation for chemo, but did not draw blood today because she said they got all the lab work done yesterday. I had put the numbing cream on a little over an hour earlier, and it again worked like a charm; I didn't feel a thing when she inserted the needle. I'm a little curious to know how much it might hurt without the numbing cream, but the area is still bruised, and I guess that's not something I really need to find out. Haha.
We went upstairs to the infusion room. A medical assistant took my vitals (height, weight, blood pressure, oxygen, and temperature), gave me a tour of the facilities (there's a cabinet with warmed blankets, and a small kitchen with snacks and drinks and water), and brought me to my "bay" (a private curtained off area with infusion equipment, a recliner for me, two simpler chairs for company, and a TV).
Looking around, at first I thought I might be the youngest patient by a couple decades. But then I saw a young woman, maybe in her 20s, with an older couple I assume were her parents. It wasn't clear at first who the patient was, but later on I saw the couple sitting in guest chairs.
Around 11:00 my infusion nurse came in. The same nurse is listed on all my upcoming appointments that are already scheduled, but I don't think it's guaranteed that I'll always get the same nurse for future appointments. She was friendly and knowledgeable, maybe with a kind of business-like way about her. I wonder if sometimes, having that kind of demeanor is a conscious decision for someone who works with cancer patients all day.
We started with the pre-medications that the oncology nurse had told me about. First I took 2 Tylenol by mouth (to ward off fever), and then the infusion nurse delivered the pre-meds one by one via IV through the port. First the steroid (name brand Decadron), then the Benadryl, then the Pepcid.
Around 11:40, after I had just finished the Benadryl, the social worker came by. The infusion nurse told her my Benadryl was about to kick in, so I might be kind of out of it, but she knew I hadn't had any contact with the social worker yet, so it was still a good idea for us to meet when she had the time.
I'm glad the infusion nurse had given the social worker the heads up, because not 5 minutes into our conversation, I realized I was focusing really hard to understand what she was saying. When I opened my mouth to answer a question, I was surprised at how quiet my own voice was, and how slow my words were coming out! I felt kind of loopy, and it took a lot of effort to talk and stay awake. I am sure that if she hadn't been there talking to me, I would have fallen asleep!
Anyway, she was really nice, and she gave me information about a breast cancer support group that meets at the Cancer Center. I know that at least half a dozen friends of mine have mothers who had/have breast cancer, but I don't personally know anyone my age who has been diagnosed. I'd be interested in seeing if there are any women around my age in the support group, but the meeting times are actually pretty inconvenient for me, so I'll have to see if I can make it work.
We spent most of the time talking about how to talk to our kids about my cancer. She gave us some helpful resources, including a book list which might work well for our kids, since they are both avid readers. One really important piece of advice she gave us is to not assume that our kids are fine just because they aren't talking about it with us. We should make a point to check in with them at a time when they feel safe and comfortable, and give them opportunities to ask questions, so they know it's okay to talk about it.
Towards the end of the social worker's visit, just before 12:00, the last pre-med finished, and they started the Herceptin. This is the targeted therapy that they deliver in 90 minutes the first time to make sure it's well-tolerated. Since it went well today, in future visits they may be able to decrease the delivery time to 30 minutes.
After the Herceptin I got the Taxol, which takes 60 minutes to deliver. When the infusion nurse handled the Taxol, besides just putting on gloves, she also put on a protective gown, a precautionary measure because topical exposure is harmful. It seemed kind of funny because, gee, I'm getting that toxic drug pumped directly into my veins!
All this time, I was diligent about my water intake. One of the informational handouts I received on chemotherapy said to drink 2 to 3 quarts of water every day. That's a lot of water! I met the goal today, but it did mean having to pee a lot. I literally had to pee like every half an hour. The IV system can run on battery power, so I just walked the IV pole into the bathroom with me. I know this is no time to feel self-conscious, but I felt self-conscious wondering if everyone who could see me thought it was amusing or weird how frequently I was using the bathroom. Haha.
I should mention, too, that since we were in the infusion room during lunch hours, we both got free lunch! There was a menu from which we could order a soup or sandwich, fruit, chips, dessert, and a beverage. It was a nice perk.
I read a few pages of a book I brought, and nodded off here and there. A lot of the time I felt kind of foggy, so really couldn't do much but just sit and rest. I could hear people in other bays watching TV or talking with their support people. Maybe once I get used to the meds, I can use the time to read or play my online games, like Scrabble and Boggle and Candy Crush! They do have free wi-fi in the hospital.
The infusion nurse also said that if I handle the meds well, I might be able to drive myself to future treatments! That would be a huge help, if Ken doesn't have to take as much time off from work. Mostly they are worried about the Benadryl causing drowsiness, which would be dangerous if I drove myself. Today, I definitely felt out of it, and would not have been able to drive myself home safely. But if I handle the chemo drugs well, they might be able to reduce the pre-med doses, and I might be able to take some orally instead of through the port. We'll have to see how things go.
Around 2:30, the infusion nurse de-accessed my port.
The only thing left was to give me my Lupron injection, but we had to wait for it to get delivered from the pharmacy department. While we waited, the infusion nurse gave me my blood work report that I had requested, an informational handout about Lupron, a visit summary with future appointments, and a super helpful printout of guidance regarding when to use which medication, what to do if I develop particular symptoms, recommendations on how to maintain my health during chemo, and when to call the doctor.
The Lupron injection was just a quick shot in my butt. I'll be getting it every 4 weeks, and the infusion nurse said we would alternate which side to use for the shot.
We left the Cancer Center at 3:00. All told, it was almost exactly 4 1/2 hours, just as the oncology nurse had estimated.
So here's a photo of me in the infusion chair, next to my IV pole. And then a close-up of the accessed port, which is covered in protective dressing.
I might still post a photo of the bare port, if it ever calms down. Right now, the incision still looks raw, the area immediately surrounding the port is bruised, and the wider area is rashy with redness and bumps. I've taken photos for my own records, and they aren't pretty!
Back at home, the only thing I noticed is a bit of dry mouth, which I think is a side effect of the Taxol. That's just more reason to keep up with my water drinking!
Apparently a lot of chemo side effects tend to show up a day or two later, but the one that might come up on the day of treatment is that feeling of "being wired" due to the steroid pre-med. I wouldn't say I feel "wired" in a jittery way, but I am up at almost 11:00 PM on the day of treatment, so maybe that is something. (Though I am usually a night owl anyway.)
I was encouraged that the infusion nurse echoed the other oncology nurse and said that with my low dose of Taxol, the risk of nausea is low, especially because I did not get morning sickness when I was pregnant. She said women who had bad nausea during pregnancy tend to get nausea with chemo as well. I did get nausea, but not to the point of vomiting, and I seem to remember it being more like nausea triggered by specific smells and food, not necessarily like a stand-alone, all-present nausea. So I hope that counts for not being at a particularly high risk for nausea now, especially if I take care to stay hydrated, and am careful about what I eat.
10/4/19: I Got Billed Again for Surgery
8/23/19: Surgery Radiologist (Radioactive Dye Injections): $137.00
With insurance, I paid: $103.64
Total cost to date: $22,134.26
With insurance, cost to me: $2,028.13
With insurance, I paid: $103.64
Total cost to date: $22,134.26
With insurance, cost to me: $2,028.13
Thursday, October 3, 2019
10/3/19: Insurance Letters Confirming Approval for Medications
Wow, I did not know that insurance pre-authorization was needed for Lupron and Herceptin. I got a letter for each today, authorizing the use of these drugs for a 1-year period.
I guess the doctor's office will need to renew authorization for Lupron every year? Interesting.
I guess the doctor's office will need to renew authorization for Lupron every year? Interesting.
10/3/19: I Picked Up the Anti-Nausea Prescription
The ondansetron hydrochloride's retail price is $147.99, but my prescription co-pay was $15.16.
Total cost to date: $21,997.26
With insurance, cost to me: $1,924.49
Total cost to date: $21,997.26
With insurance, cost to me: $1,924.49
10/3/19: Medical Oncologist Appointment
My medical oncologist is so warm, she gave me two hugs! One at the start of the appointment, and one at the end.
Mostly we were touching base before I start chemo tomorrow. The biggest update she gave me was that she spoke with the genetics specialist about the VUS in my BRCA2 gene, and she does not recommend getting my ovaries removed to prevent ovarian cancer. There just isn't enough known about the VUS, and it's not enough to justify ovary removal. I was relieved because in the limited research I've done so far, it sounds like a pre-menopausal oophorectomy carries a lot of unknown long-term risks.
She confirmed I will start Lupron with chemotherapy tomorrow. It'll be a monthly injection in the butt. We talked about how Lupron will cause a chemically-induced menopause, so expected side effects are basically the typical symptoms of menopause. I asked if that includes osteoporosis. The short answer is yes; but given my current health, she said she wouldn't expect me to be at high risk for early onset osteoporosis. Chemotherapy itself can actually increase a patient's risk for osteoporosis, so she said she typically orders a bone density scan about 2 years after chemo. She also talked about ways to promote bone health, like doing weight-bearing exercises.
At last week's meeting with the oncology nurse, I got the impression that my risk for nausea was relatively low. But my medical oncologist seemed surprised that the nurse hadn't prescribed this other anti-nausea medication called ondansetron hydrochloride (name brand Zofran), so she gave me that prescription today. Googling it now, it sounds like a preventative medication that is usually taken in advance, but both the doctor and the oncology nurse who sat in on the appointment today (not the same nurse I met with before) said I could take it as needed.
I now have three anti-nausea prescriptions, so I asked how do I know which one to take when? The nurse said the Zofran should be my first option for severe nausea (even though it might cause constipation), and I could use the other one (prochlorperazine maleate) for mild nausea. They didn't mention when to choose the third one, which is primarily for sedation anyway. The nurse also said I could alternate them every 6-8 hours, and that the chemo nurse might give me a kind of calendar or schedule as a guide for when to take which medication.
She reiterated a desire for me to connect with the social worker. The oncology nurse said she'd see if the social worker can stop by during my infusion tomorrow.
Mostly we were touching base before I start chemo tomorrow. The biggest update she gave me was that she spoke with the genetics specialist about the VUS in my BRCA2 gene, and she does not recommend getting my ovaries removed to prevent ovarian cancer. There just isn't enough known about the VUS, and it's not enough to justify ovary removal. I was relieved because in the limited research I've done so far, it sounds like a pre-menopausal oophorectomy carries a lot of unknown long-term risks.
She confirmed I will start Lupron with chemotherapy tomorrow. It'll be a monthly injection in the butt. We talked about how Lupron will cause a chemically-induced menopause, so expected side effects are basically the typical symptoms of menopause. I asked if that includes osteoporosis. The short answer is yes; but given my current health, she said she wouldn't expect me to be at high risk for early onset osteoporosis. Chemotherapy itself can actually increase a patient's risk for osteoporosis, so she said she typically orders a bone density scan about 2 years after chemo. She also talked about ways to promote bone health, like doing weight-bearing exercises.
At last week's meeting with the oncology nurse, I got the impression that my risk for nausea was relatively low. But my medical oncologist seemed surprised that the nurse hadn't prescribed this other anti-nausea medication called ondansetron hydrochloride (name brand Zofran), so she gave me that prescription today. Googling it now, it sounds like a preventative medication that is usually taken in advance, but both the doctor and the oncology nurse who sat in on the appointment today (not the same nurse I met with before) said I could take it as needed.
I now have three anti-nausea prescriptions, so I asked how do I know which one to take when? The nurse said the Zofran should be my first option for severe nausea (even though it might cause constipation), and I could use the other one (prochlorperazine maleate) for mild nausea. They didn't mention when to choose the third one, which is primarily for sedation anyway. The nurse also said I could alternate them every 6-8 hours, and that the chemo nurse might give me a kind of calendar or schedule as a guide for when to take which medication.
She reiterated a desire for me to connect with the social worker. The oncology nurse said she'd see if the social worker can stop by during my infusion tomorrow.
10/3/19: Port Appointment
Today the port nurse "accessed" my port for the first time. This means she placed a needle into the port. I think she did a blood draw. I also think she "flushed" it, I'm not sure what that means exactly, but she made sure it's working properly, and that the catheter isn't blocked.
One of my prescriptions is for a lidocaine-prilocaine numbing cream. It's not as thick as I thought it would be; it's kind of runny. The port nurse had told me to put it on about an hour before the port needs to be accessed, and to leave a visible layer on the port "so it looks like toothpaste," i.e., don't rub it into the skin. She also let me know that I only need to use the cream on the port itself, where the bump is. Finally, she recommended using a square of Glad Press 'n Seal to cover the port, so the cream doesn't get rubbed off onto my clothes.
The anticipation of the procedure made me nervous, but the port nurse was great about explaining each step. The port area is still bruised, so it felt tender as she poked around, but the numbing cream worked just as it should, and I did not feel the needle at all.
So, I guess I'll be getting used to this procedure. My port will need to be accessed at the start of every chemo treatment, and de-accessed before leaving.
Wednesday, October 2, 2019
10/2/19: (~5 Weeks Post-DMX) Physical Therapy Appointment #3
I like my physical therapist a lot. Like many others I've encountered in my hospital, she is not just professional and knowledgable, she has a warm and kind personality as well.
Most of today's session was spent massaging the cording in my right underarm. It hurt a bit as she rubbed the cords, but it also felt better afterwards. There are still a couple stubborn little cords that haven't snapped.
Every week she measures the range of motion of my arms in degrees. She takes two measurements for each arm. First, while lying down, I raise my arm straight up and as far back over my head as possible. Then, still lying down, I hold my arm at my side and sweep it outward like I'm doing a snow angel. I like that there is a quantifiable way to track my progress.
Each week so far there has been some improvement in all measurements. I can also feel some muscles being used where I usually feel numb, so I hope that's a good sign. Anyway, my forward range of motion is improving more quickly. The sideways range of motion is still pretty limited; I can just barely hold my arms at shoulder level.
The physical therapy room is right across the hall from the chemotherapy infusion room. My physical therapist said she may be able to visit me and work on my cording while I get my infusion. She'll check her schedule against my infusion schedule to see if she can make that work.
For my range of motion, I just need to keep doing the exercises. I'm not sure if the physical therapist can take measurements during infusion, too, or if I'll end up having separate appointments, which might not be needed every week.
10/2/19: I Got My Port Checked Again - It's Fine
Ah, the port nurse is great. She was able to see me before my physical therapy appointment. I felt silly going in again even before my port gets used, but she said she's glad I came in, that it's good I'm a partner in my own care!
I showed her the rash. We noticed how there's like a clear line right down the middle of my neck and collar bone, where it's rashy on the side of the port and not at all rashy on the other side. I remember that's pretty much exactly the borderline of where the surgeon cleaned me off while on the operating table.
The nurse thinks I'm sensitive or allergic to the topical antiseptic chlorhexidine, which is probably what the surgeon used. She said she usually uses the same cleanser when she accesses the port, but she will use a different one for me, a brown solution called Betadine.
I showed her the rash. We noticed how there's like a clear line right down the middle of my neck and collar bone, where it's rashy on the side of the port and not at all rashy on the other side. I remember that's pretty much exactly the borderline of where the surgeon cleaned me off while on the operating table.
The nurse thinks I'm sensitive or allergic to the topical antiseptic chlorhexidine, which is probably what the surgeon used. She said she usually uses the same cleanser when she accesses the port, but she will use a different one for me, a brown solution called Betadine.
Tuesday, October 1, 2019
10/1/19: I Talked to the Port Nurse Again
I had assumed that the rashiness around my port was a result of scratching to relieve itchiness, which I assumed was a normal part of the incisions healing. But this morning I started to wonder if it's the other way around... Maybe I am itchy because I have a rash?
This morning I took 25 mg of Benadryl to see what would happen. It did relieve the itchiness quite a bit. A rash I know might take longer to go away.
While I debated whether or not to call the port nurse about this itchy rash, I got a phone call reminding me about an upcoming appointment on Thursday. I took advantage of having someone on the phone and mentioned the itchy rash around my port. The person who called may or may not have been a nurse, but she was very nice about it and said she'd have the port nurse call me back.
When I spoke with the port nurse, she did not say that being itchy or having a rash was normal. But she also didn't seem particularly concerned. She gave me some ideas to help relieve the itching, like using a cold compress, or applying some hydrocortisone cream (being careful not to get any into the incisions). She said maybe my skin was reacting to the Tegaderm dressing, or even the cleanser used during the surgery. I think the only real problem they worry about is infection, and since I have no pain or fever, that doesn't seem to be the issue.
I will be at the hospital tomorrow for a physical therapy appointment, and the port nurse very kindly said I could stop by before or after, and she'd take a look at it. I don't want to be "that patient" who worries about every little symptom, but it really does help to get reassurance from a medical professional!
This morning I took 25 mg of Benadryl to see what would happen. It did relieve the itchiness quite a bit. A rash I know might take longer to go away.
While I debated whether or not to call the port nurse about this itchy rash, I got a phone call reminding me about an upcoming appointment on Thursday. I took advantage of having someone on the phone and mentioned the itchy rash around my port. The person who called may or may not have been a nurse, but she was very nice about it and said she'd have the port nurse call me back.
When I spoke with the port nurse, she did not say that being itchy or having a rash was normal. But she also didn't seem particularly concerned. She gave me some ideas to help relieve the itching, like using a cold compress, or applying some hydrocortisone cream (being careful not to get any into the incisions). She said maybe my skin was reacting to the Tegaderm dressing, or even the cleanser used during the surgery. I think the only real problem they worry about is infection, and since I have no pain or fever, that doesn't seem to be the issue.
I will be at the hospital tomorrow for a physical therapy appointment, and the port nurse very kindly said I could stop by before or after, and she'd take a look at it. I don't want to be "that patient" who worries about every little symptom, but it really does help to get reassurance from a medical professional!
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