My sister is in town for Thanksgiving, so she came with me to today's appointment. It was a smooth and uneventful visit!
I took off the dressing for the port incision at home because I needed to put the numbing cream on the port itself. The incision is covered with Steri-Strips, so I still can't see what the stitches look like.
I got my port accessed at 9:45, headed up to the infusion room, got my vitals checked, and was settled into a bay by 10:15. The infusion nurse gave me my pre-meds, and we waited for my blood work to finish and for the hospital pharmacy to prepare the drugs. (I think the Taxol and Herceptin aren't prepared until the blood work confirms I will get treatment that day; the drugs expire within 24 hours, and it sounds like the nurses don't request them until they know they will definitely be used.)
I started the Herceptin just before 11:00, then started Taxol at 11:30.
After the Taxol finished at 12:30, the nurse de-accessed my port and looked at the port incision. She said to leave the Steri-Strips on until they fall off by themselves, and next Friday she'll remove the stitches. (Actually, she said she wouldn't be in next week, but she'll leave instructions.) She also confirmed I can go ahead and cancel the other appointment that the other nurse made for me in the city.
I got my Lupron shot, and my blood work report. I had two values out of range, the same two as last week. The Im Gran (Immature Granulyte) value crept up a tiny bit higher, and the AbsLymp (Absolute Lymphocyte) dropped a teeny bit lower.
We left around 12:45. Today's visit was about 3 hours total, probably the shortest visit I've had!
It was nice to have the one-on-one time with my sister. For the first time, though, I did not get offered a lunch! I'm guessing it was an oversight, maybe because the medical assistant who checked me into the infusion room wasn't the one who is usually there. It was fine, though. With yesterday being Thanksgiving, we knew we'd have plenty of food waiting for us back at our parents' house.
Friday, November 29, 2019
11/28/19: Cycle 8 Side Effects
My usual symptoms remain consistent:
- Continued hair loss (I'm too vain to post any more photos.)
- Blurry vision
- Mild headache
- Blood in stuffy/runny nose
- Acne (face, back, and scalp)
- Dry mouth (on day 1 of cycle)
- Insomnia / Trouble sleeping (on day 1 of cycle, due to steroid pre-med)
- Occasional mild neuropathy (mostly on days 3 and 4 of cycle)
- Tiredness / Fatigue (on days 3 through 6 of cycle)
I have my best days on the last day of each cycle (Thursday), and the first two days of the next cycle (Friday and Saturday).
I did notice that this week, my scalp was not as sensitive as it had been before. Still occasionally itchy or tingly, but no longer painful if touched. I wonder if that's because I have so little hair to bother my scalp at this point. Sigh.
I did notice that this week, my scalp was not as sensitive as it had been before. Still occasionally itchy or tingly, but no longer painful if touched. I wonder if that's because I have so little hair to bother my scalp at this point. Sigh.
Wednesday, November 27, 2019
11/27/19: My Port Incision was Re-Stitched
Yesterday, a nurse in the radiology department called. She said she saw the photo of my port incision (presumably the one my infusion nurse took), and it needs to be re-stitched!! She got me in today to see the same doctor who performed my original port placement surgery.
As an aside, I'll mention that later in the day yesterday, I actually got a second call from a different nurse, this one from the interventional radiology department in the main hospital in the city. She had the exact same message for me, only she scheduled me to see a doctor next week in the city. I told her about the other nurse, and the other appointment at my local satellite location. She said to keep the local appointment, and then apologized for the confusion. I said it's okay, it's nice to know that all the right people are looking at my case and trying to help!
Anyway, so today's appointment was quick, only like half an hour.
I put on a gown, walked into the operating room, and laid down on the table. The doctor said the incision looked good in that it's not infected, and it looks like it's healing fine under the skin. He said it looked worse in the photo.
He started to clean the area around the port. As he was applying the antiseptic, I thought to ask, "Is that chlorhexidine?" It took me a moment to speak up as I realized what he was doing, and I wondered if he had seen my chlorhexidine allergy in my medical file. But I guess I can't assume people will see it! I told him about the rash I got after the port placement; it's not like a serious reaction, but probably worth avoiding if possible. Without missing a beat, he reached for a towel and very calmly said, "Okay, we'll just wipe this off." It was kind of funny. So then he asked the nurse for some Betadine, but they didn't have any in the operating room. The nurse left to get some, but I guess the doctor got tired of waiting, because he decided to clean the area with alcohol.
I got 2 injections of local anesthesia. The pinch and burn hurt a lot! But then I didn't feel a thing as the doctor stitched up the incision with regular sutures. He asked me casual questions about Thanksgiving while he worked.
I have no idea what the stitches look like, they're covered with gauze and Tegaderm. The doctor said my nurses can remove the dressing on Friday when I go in for chemo, and he'll tell them they can remove the stitches next Friday.
Now that the local anesthesia is wearing off, the area kind of stings. I just hope the incision heals properly now, so it can be one less thing to worry about!
As an aside, I'll mention that later in the day yesterday, I actually got a second call from a different nurse, this one from the interventional radiology department in the main hospital in the city. She had the exact same message for me, only she scheduled me to see a doctor next week in the city. I told her about the other nurse, and the other appointment at my local satellite location. She said to keep the local appointment, and then apologized for the confusion. I said it's okay, it's nice to know that all the right people are looking at my case and trying to help!
Anyway, so today's appointment was quick, only like half an hour.
I put on a gown, walked into the operating room, and laid down on the table. The doctor said the incision looked good in that it's not infected, and it looks like it's healing fine under the skin. He said it looked worse in the photo.
He started to clean the area around the port. As he was applying the antiseptic, I thought to ask, "Is that chlorhexidine?" It took me a moment to speak up as I realized what he was doing, and I wondered if he had seen my chlorhexidine allergy in my medical file. But I guess I can't assume people will see it! I told him about the rash I got after the port placement; it's not like a serious reaction, but probably worth avoiding if possible. Without missing a beat, he reached for a towel and very calmly said, "Okay, we'll just wipe this off." It was kind of funny. So then he asked the nurse for some Betadine, but they didn't have any in the operating room. The nurse left to get some, but I guess the doctor got tired of waiting, because he decided to clean the area with alcohol.
I got 2 injections of local anesthesia. The pinch and burn hurt a lot! But then I didn't feel a thing as the doctor stitched up the incision with regular sutures. He asked me casual questions about Thanksgiving while he worked.
I have no idea what the stitches look like, they're covered with gauze and Tegaderm. The doctor said my nurses can remove the dressing on Friday when I go in for chemo, and he'll tell them they can remove the stitches next Friday.
Now that the local anesthesia is wearing off, the area kind of stings. I just hope the incision heals properly now, so it can be one less thing to worry about!
Tuesday, November 26, 2019
11/25/19: Insurance Letter Confirming Approval for Echocardiogram
Last Wednesday, when I made my appointment for another echocardiogram, I was given a range of allowable dates. Today I received the letter from my insurance company giving authorization for the echocardiogram within those dates.
The echo is to monitor my heart because one of the possible side effects of Herceptin is weakening of the heart's pumping action.
Monday, November 25, 2019
11/25/19: (3 Months Post-DMX) The Last Bit of Surgical Glue Came Off
For the record, it took about 3 months for every last bit of the surgical glue to come off my incisions.
The stitch that poked out is still there, only now it's really tiny, and only noticeable when I go looking for it.
The areas around the incisions still feel weird. Same tightness and tingling, and numbness in my right underarm.
I need to stay on myself to keep doing my physical therapy exercises. My range of motion is good enough to not limit my daily activities, so the exercises don't feel as pressing anymore. But I can definitely feel the setback if I skip a couple days.
The stitch that poked out is still there, only now it's really tiny, and only noticeable when I go looking for it.
The areas around the incisions still feel weird. Same tightness and tingling, and numbness in my right underarm.
I need to stay on myself to keep doing my physical therapy exercises. My range of motion is good enough to not limit my daily activities, so the exercises don't feel as pressing anymore. But I can definitely feel the setback if I skip a couple days.
Sunday, November 24, 2019
11/24/19: This Bible Verse Resonated with Me
In one of the Facebook support groups, someone posted this Bible verse. It's exactly what I needed to hear, at just this time.
Losing my hair totally sucks. It's traumatic and distressing.
If I take this Bible verse literally, I can only hope that if the chemotherapy is killing my hair follicles, laying waste to my outward appearance, then it's killing the cancer cells, too, inwardly renewing my health.
Losing my hair totally sucks. It's traumatic and distressing.
If I take this Bible verse literally, I can only hope that if the chemotherapy is killing my hair follicles, laying waste to my outward appearance, then it's killing the cancer cells, too, inwardly renewing my health.
Saturday, November 23, 2019
11/22/19: I Had Success with Amazon Prime Wardrobe
At Ken's suggestion, I gave Amazon Prime Wardrobe a try.
Prime Wardrobe works like Stitch Fix, except you can choose your own items. You can pay extra to get styled by a personal shopper, but I didn't, since the biggest benefit over Stitch Fix, for me, is the ability to choose items myself. You can also choose up to 8 items, whereas Stitch Fix sends you exactly 5 in each fix.
It went well! I ordered 5 items: a sleeveless shirt, a long-sleeve shirt, a scarf, a vest with draping material, and a jean jacket. I bought 4 items and returned 1, the long-sleeve shirt.
They actually sent the wrong shirt. It was long-sleeve and the same color as the one I ordered, but otherwise it was completely different. At first I thought it was simply a mistake. But when I looked again at the items online, 3 out of the 5 are no longer eligible for Prime Wardrobe! So maybe my shirt isn't available anymore, and they just sent me the closest thing. Kind of annoying, but I guess that's how they keep shoppers coming back, by frequently updating their "eligible" inventory.
I also noticed that some of the prices are drastically different - both higher and lower - than what they were when I placed my order. That's kind of annoying, too, seeing that their prices can be so variable.
Prime Wardrobe works like Stitch Fix, except you can choose your own items. You can pay extra to get styled by a personal shopper, but I didn't, since the biggest benefit over Stitch Fix, for me, is the ability to choose items myself. You can also choose up to 8 items, whereas Stitch Fix sends you exactly 5 in each fix.
It went well! I ordered 5 items: a sleeveless shirt, a long-sleeve shirt, a scarf, a vest with draping material, and a jean jacket. I bought 4 items and returned 1, the long-sleeve shirt.
They actually sent the wrong shirt. It was long-sleeve and the same color as the one I ordered, but otherwise it was completely different. At first I thought it was simply a mistake. But when I looked again at the items online, 3 out of the 5 are no longer eligible for Prime Wardrobe! So maybe my shirt isn't available anymore, and they just sent me the closest thing. Kind of annoying, but I guess that's how they keep shoppers coming back, by frequently updating their "eligible" inventory.
I also noticed that some of the prices are drastically different - both higher and lower - than what they were when I placed my order. That's kind of annoying, too, seeing that their prices can be so variable.
11/22/19: Chemo Cycle #8 of 12 + Medical Oncologist Appointment + Social Worker Visit
Today my cousin drove me to my treatment. She brought her laptop and worked remotely while I was in my appointments, and the rest of the time we had plenty to chat about. Really, so funny that the time spent getting chemo for cancer can be spent in such an enjoyable way with good company!
We budgeted for traffic, and still arrived a bit early for my 8:15 port access appointment. The port nurse noticed the irritated skin around my port right away. She expressed frustration because the port should have healed long ago; I shouldn't need to be using dressings with adhesives this far out, and for so long. She said the incision doesn't look infected, so she recommended I stop using the antibiotic ointment, and leave the incision uncovered for a while. I should just be sure to regularly wash it with soap and water.
My appointment with the medical oncologist wasn't until 9:00, so we had a bit of a wait. When the medical assistant took my vitals, she skipped height and oxygen. (Every other time until today, they've always measured height, weight, blood pressure, oxygen, and temperature.) I asked why, and she just said it wasn't necessary to take those measurements every week.
I love when my medical oncologist hugs me hello and goodbye! When she asked about my recent side effects, I told her about the hair loss, and she was careful to validate my feelings. She reassured me that everything I'm feeling is normal; in fact, the timing is in line with the progression of emotions experienced by other patients, too. She asked if I was interested in a wig, and I said no. I was surprised myself that I didn't take longer to hem and haw, or ask for a prescription just in case. I think in an effort to make me feel better about my response, she talked about how wigs are not always the be-all and end-all solution they are sometimes made out to be, because some people find them hot or uncomfortable or itchy, and sometimes they cause a rash on the scalp. She also mentioned the possibility of shaving my head, but I am just not feeling that option, either.
Regarding my port incision, she agreed with the port nurse that there is an unusually high number of port incisions that haven't been healing properly. She said the appropriate people are being informed, and hopefully they will figure out what is going on. I hope they get everything resolved before I get my port removed, so I won't have so much trouble with the incision healing from that surgery! (I won't get my port out for almost another year, so they have time.)
During the physical exam, I mentioned that my belly feels flabbier. I haven't had a flat tummy since having kids, so I'm used to a little belly fat, and it's not that it's getting bigger, it's just flabbier, not as firm. I know weight gain is a side effect of Lupron (because weight gain is a side effect of the menopause that the Lupron causes), so I was surprised when the doctor said the flabbiness was probably from the steroid pre-med. She said it's temporary while taking the Decadron. I hope she's right!
We got to my bay around 9:45, and I started my pre-meds around 10:00.
About 10:30, my social worker came in, and my cousin stepped out. The social worker wanted to follow up on our conversation last week about hair loss. I told her how I found her words last week very helpful. We talked some more about how visible hair loss is as a side effect uniquely associated with cancer patients, and how even efforts to hide the hair loss (like with a wig or hats) are themselves visible, so it's the one side effect that just can't be masked.
She specifically asked how Ken and the kids are doing. I said I think the kids are doing remarkably well, but maybe Ken could use a bit more support. I know he appreciates having work as a way to compartmentalize, but being a caregiver is a huge weight to carry, and also a role that is often overlooked. The infusion nurse was in the bay at this time, having just started my Herceptin, and she suggested I help brainstorm friends he could go out with. Even if they don't talk about feelings, it would be good for him to get a break.
The social worker also asked me about Thanksgiving coming up next week. It'll be my first time seeing many family members since starting chemo. I'm not exactly anxious, but there's uncertainty in how I will feel. Finally, she encouraged me again to attend the in-person support group, perhaps when my weekly chemo ends. The group meets at an inconvenient time for me, but I agreed it might be more doable when I'm not getting treatment quite so often.
I started Taxol around 11:00, and finished up just around 12:00.
When the infusion nurse de-accessed my port, she took a photo of the incision to show her colleague who specializes in port care. (This person calls herself the "Port Authority"!! Hahahaha. I love it.)
My nurse said it looks like the incision won't be closing up tightly, which I assume means a more visible scar. She said when I get my port out, I should tell the surgeon that sutures may work better than Dermabond skin glue to close the incision. But that's a much later conversation.
She also suggested using Aquafor on the irritated skin around my port. She gave me a couple large gauze pads to place over the area, to keep the ointment from getting on my clothes. She figured the pads are large enough that maybe they will stay in place just being tucked under my camisole, without using any adhesives.
Finally, she gave me my blood work. Two values were out of range. Im Gran (Immature Granuloyctes) continues to be a little high, a little higher than last week. And AbsLymp (Absolute Lymphocyte) was a little low, which I saw before in Cycle #6.
All told, this visit was about 4 hours. We did order lunch, but finished and left before it was delivered! We decided to eat at a local restaurant nearby. It was nice spending the time together, even if it was precipitated by chemo!
We budgeted for traffic, and still arrived a bit early for my 8:15 port access appointment. The port nurse noticed the irritated skin around my port right away. She expressed frustration because the port should have healed long ago; I shouldn't need to be using dressings with adhesives this far out, and for so long. She said the incision doesn't look infected, so she recommended I stop using the antibiotic ointment, and leave the incision uncovered for a while. I should just be sure to regularly wash it with soap and water.
My appointment with the medical oncologist wasn't until 9:00, so we had a bit of a wait. When the medical assistant took my vitals, she skipped height and oxygen. (Every other time until today, they've always measured height, weight, blood pressure, oxygen, and temperature.) I asked why, and she just said it wasn't necessary to take those measurements every week.
I love when my medical oncologist hugs me hello and goodbye! When she asked about my recent side effects, I told her about the hair loss, and she was careful to validate my feelings. She reassured me that everything I'm feeling is normal; in fact, the timing is in line with the progression of emotions experienced by other patients, too. She asked if I was interested in a wig, and I said no. I was surprised myself that I didn't take longer to hem and haw, or ask for a prescription just in case. I think in an effort to make me feel better about my response, she talked about how wigs are not always the be-all and end-all solution they are sometimes made out to be, because some people find them hot or uncomfortable or itchy, and sometimes they cause a rash on the scalp. She also mentioned the possibility of shaving my head, but I am just not feeling that option, either.
Regarding my port incision, she agreed with the port nurse that there is an unusually high number of port incisions that haven't been healing properly. She said the appropriate people are being informed, and hopefully they will figure out what is going on. I hope they get everything resolved before I get my port removed, so I won't have so much trouble with the incision healing from that surgery! (I won't get my port out for almost another year, so they have time.)
During the physical exam, I mentioned that my belly feels flabbier. I haven't had a flat tummy since having kids, so I'm used to a little belly fat, and it's not that it's getting bigger, it's just flabbier, not as firm. I know weight gain is a side effect of Lupron (because weight gain is a side effect of the menopause that the Lupron causes), so I was surprised when the doctor said the flabbiness was probably from the steroid pre-med. She said it's temporary while taking the Decadron. I hope she's right!
We got to my bay around 9:45, and I started my pre-meds around 10:00.
About 10:30, my social worker came in, and my cousin stepped out. The social worker wanted to follow up on our conversation last week about hair loss. I told her how I found her words last week very helpful. We talked some more about how visible hair loss is as a side effect uniquely associated with cancer patients, and how even efforts to hide the hair loss (like with a wig or hats) are themselves visible, so it's the one side effect that just can't be masked.
She specifically asked how Ken and the kids are doing. I said I think the kids are doing remarkably well, but maybe Ken could use a bit more support. I know he appreciates having work as a way to compartmentalize, but being a caregiver is a huge weight to carry, and also a role that is often overlooked. The infusion nurse was in the bay at this time, having just started my Herceptin, and she suggested I help brainstorm friends he could go out with. Even if they don't talk about feelings, it would be good for him to get a break.
The social worker also asked me about Thanksgiving coming up next week. It'll be my first time seeing many family members since starting chemo. I'm not exactly anxious, but there's uncertainty in how I will feel. Finally, she encouraged me again to attend the in-person support group, perhaps when my weekly chemo ends. The group meets at an inconvenient time for me, but I agreed it might be more doable when I'm not getting treatment quite so often.
I started Taxol around 11:00, and finished up just around 12:00.
When the infusion nurse de-accessed my port, she took a photo of the incision to show her colleague who specializes in port care. (This person calls herself the "Port Authority"!! Hahahaha. I love it.)
My nurse said it looks like the incision won't be closing up tightly, which I assume means a more visible scar. She said when I get my port out, I should tell the surgeon that sutures may work better than Dermabond skin glue to close the incision. But that's a much later conversation.
She also suggested using Aquafor on the irritated skin around my port. She gave me a couple large gauze pads to place over the area, to keep the ointment from getting on my clothes. She figured the pads are large enough that maybe they will stay in place just being tucked under my camisole, without using any adhesives.
Finally, she gave me my blood work. Two values were out of range. Im Gran (Immature Granuloyctes) continues to be a little high, a little higher than last week. And AbsLymp (Absolute Lymphocyte) was a little low, which I saw before in Cycle #6.
All told, this visit was about 4 hours. We did order lunch, but finished and left before it was delivered! We decided to eat at a local restaurant nearby. It was nice spending the time together, even if it was precipitated by chemo!
Thursday, November 21, 2019
11/21/19: Cycle 7 Side Effects
Omg. This hair loss business is traumatic for sure. I can't stand it. I've cried more about losing my hair than about losing my boobs.
My scalp downright hurts. It's tingly and itchy and anything that touches it causes pain. Not a lot, but enough to trigger an "ow".
Oh, I guess I'm not such a genius after all. My Glad Press 'n Seal trick worked for a while, but I guess it just took longer for my skin to react. Now it's red and rashy at all points of contact with bandaids, medical tape, and Glad Press 'n Seal. I actually only recently remembered that when my mom had a wound, the nurse used a skin barrier wipe to protect her skin from adhesives. By the time I thought of it, I figured my wound was close to healing, so I didn't bother with it, but maybe I should look into it after all. In the meantime, I guess I'll still use the antibiotic ointment, but just leave the wound uncovered. It still has 3 whitish spots that look like they aren't done healing.
Everything else is the same as usual: background headache, blurry vision, blood in stuffy/runny nose, acne, occasional mild neuropathy, fatigue Sunday through Wednesday.
I haven't mentioned it in a while, but Friday night I am always up late, presumably because of the steroid pre-med Decadron. I consistently get about 3-4 hours of sleep on Friday night, but still have a good day on Saturday, because the steroid is still in my system. It wears off by Sunday, when the fatigue kicks in. By Thursday my energy level feels almost normal. It's helpful having a predictable energy schedule to plan around: lots of energy Friday through Saturday, tapers on Sunday, tired through Wednesday, fine on Thursday. Repeat.
My scalp downright hurts. It's tingly and itchy and anything that touches it causes pain. Not a lot, but enough to trigger an "ow".
Oh, I guess I'm not such a genius after all. My Glad Press 'n Seal trick worked for a while, but I guess it just took longer for my skin to react. Now it's red and rashy at all points of contact with bandaids, medical tape, and Glad Press 'n Seal. I actually only recently remembered that when my mom had a wound, the nurse used a skin barrier wipe to protect her skin from adhesives. By the time I thought of it, I figured my wound was close to healing, so I didn't bother with it, but maybe I should look into it after all. In the meantime, I guess I'll still use the antibiotic ointment, but just leave the wound uncovered. It still has 3 whitish spots that look like they aren't done healing.
Everything else is the same as usual: background headache, blurry vision, blood in stuffy/runny nose, acne, occasional mild neuropathy, fatigue Sunday through Wednesday.
I haven't mentioned it in a while, but Friday night I am always up late, presumably because of the steroid pre-med Decadron. I consistently get about 3-4 hours of sleep on Friday night, but still have a good day on Saturday, because the steroid is still in my system. It wears off by Sunday, when the fatigue kicks in. By Thursday my energy level feels almost normal. It's helpful having a predictable energy schedule to plan around: lots of energy Friday through Saturday, tapers on Sunday, tired through Wednesday, fine on Thursday. Repeat.
Tuesday, November 19, 2019
11/19/19: A Community Member Died of Breast Cancer
Today I got news that a former teacher in our school district has died of breast cancer. I did not know her. She was first diagnosed 9 years ago with early stage breast cancer. She underwent surgery and chemotherapy, but had a metastatic recurrence about 5 years later. She is the second person in my community (that I know of) to die of breast cancer in as many years.
Two years ago, a mother of children in my kids' elementary school died at age 43, the same age I am now. I did not know her, either. I do know many people who knew her well, and I heard only that she had a very aggressive form of breast cancer.
Generally speaking, 5-year relative survival rates for breast cancer are very encouraging; on average, the 5-year relative survival rate is 90%. Farther out, the 10-year relative survival rate drops to 83%. My cancer was localized, so the statistics look especially good for me. But the fact is, statistics aren't predictions; they only give an idea of possibilities.
(Frankly, any of us could get hit by a bus at any time, so there's that perspective to keep in mind, too...)
While I appreciate optimism - indeed, having a positive attitude is essential to good health and recovery - I also think it's important to be realistic. The way some people responded to my diagnosis, it's like they thought it was No Big Deal because breast cancer has such an encouraging survival rate. But cancer is cancer, and there is no cure for breast cancer.
I know it can be difficult to figure out what to say to someone with cancer, and I know everyone means well, but these kinds of comments I do not find to be helpful:
"I know 2 other women who had breast cancer and beat it. You will, too!"
"Breast cancer is very treatable now, there are lots of new therapies. You will be fine!"
"This is just a temporary phase of your life. You will go through treatment and come out stronger!"
While it is inspiring to hear about women who are thriving after breast cancer, the truth is, there are different kinds of breast cancer, different stages and different grades. Each patient lives a unique life, with different habits of exercise and nutrition, and their own genetic history. My cancer and my prognosis can't be compared to anyone else's story based solely on the fact that we both had "breast cancer".
There is no way to know if I will ever have a recurrence, so reassuring me that I won't does not help. In fact, it minimizes the fear and anxiety of living with a constant threat of recurrence.
I think more compassionate comments might sound like:
"I know a few other women who have been through breast cancer. I don't know how their diagnoses compare to yours, but would you be interested in talking with them?"
"I'm so sorry you are going through this. It's a hard path, and it sounds like some days are a real struggle. Do you want to vent? I'm here to listen."
"I know I can't really understand what you're going through. I'm cheering for you, and I'm proud of you for facing the challenges of each day. I hope it gets better soon."
11/22/19 Update: A couple days after I posted this entry, a friend on Facebook posted this related article, which speaks to the difference between the two types of comments above.
Two years ago, a mother of children in my kids' elementary school died at age 43, the same age I am now. I did not know her, either. I do know many people who knew her well, and I heard only that she had a very aggressive form of breast cancer.
Generally speaking, 5-year relative survival rates for breast cancer are very encouraging; on average, the 5-year relative survival rate is 90%. Farther out, the 10-year relative survival rate drops to 83%. My cancer was localized, so the statistics look especially good for me. But the fact is, statistics aren't predictions; they only give an idea of possibilities.
(Frankly, any of us could get hit by a bus at any time, so there's that perspective to keep in mind, too...)
While I appreciate optimism - indeed, having a positive attitude is essential to good health and recovery - I also think it's important to be realistic. The way some people responded to my diagnosis, it's like they thought it was No Big Deal because breast cancer has such an encouraging survival rate. But cancer is cancer, and there is no cure for breast cancer.
I know it can be difficult to figure out what to say to someone with cancer, and I know everyone means well, but these kinds of comments I do not find to be helpful:
"I know 2 other women who had breast cancer and beat it. You will, too!"
"Breast cancer is very treatable now, there are lots of new therapies. You will be fine!"
"This is just a temporary phase of your life. You will go through treatment and come out stronger!"
While it is inspiring to hear about women who are thriving after breast cancer, the truth is, there are different kinds of breast cancer, different stages and different grades. Each patient lives a unique life, with different habits of exercise and nutrition, and their own genetic history. My cancer and my prognosis can't be compared to anyone else's story based solely on the fact that we both had "breast cancer".
There is no way to know if I will ever have a recurrence, so reassuring me that I won't does not help. In fact, it minimizes the fear and anxiety of living with a constant threat of recurrence.
I think more compassionate comments might sound like:
"I know a few other women who have been through breast cancer. I don't know how their diagnoses compare to yours, but would you be interested in talking with them?"
"I'm so sorry you are going through this. It's a hard path, and it sounds like some days are a real struggle. Do you want to vent? I'm here to listen."
"I know I can't really understand what you're going through. I'm cheering for you, and I'm proud of you for facing the challenges of each day. I hope it gets better soon."
11/22/19 Update: A couple days after I posted this entry, a friend on Facebook posted this related article, which speaks to the difference between the two types of comments above.
Saturday, November 16, 2019
11/16/19: I Solved My Port Dressing Problem
I would feel like a genius, except I can't believe it took me so long to figure this out.
Using medical tape with sterile gauze to cover the antiobiotic ointment on my port incision was still irritating my skin. I finally realized I could use Glad Press 'n Seal on top of the gauze!
Using medical tape with sterile gauze to cover the antiobiotic ointment on my port incision was still irritating my skin. I finally realized I could use Glad Press 'n Seal on top of the gauze!
11/21/19 Update: It didn't work. Just took longer for my skin to get irritated.
11/15/19: I Wore a Headcover
Last night, when I met a good friend for dinner, I decided not to wear a headcover. I figured, we've been friends for 20 years now, I knew this person wouldn't judge me, and I thought it would be a good experiment to just see how I felt, being out and about with my thinning hair.
We sat at the bar, with our backs facing the main entrance. I was pretty self-conscious of how visible my bald line must be to anyone walking into the bar area. It didn't bother me in that I didn't spend much time wondering if anyone noticed or cared, but I did notice that I spent a lot of time fussing with my hair, running my fingers through the top so some hair would fall straight back over the bald line.
Tonight I did another experiment. We went out to dinner, me and Ken and the kids, and I wore a headcover that I had actually bought a couple weeks ago in preparation for the possibility of needing it.
I had picked this headcover because I thought it was simple yet versatile, and being as averse to shopping as I am, I just wanted to minimize the shopping. I wanted something that had a little shape to it, but not have the rigidity of baseball caps, or their logos. I was also given the advice to find something soft, to help soothe my sensitive scalp.
So when I wore the hat to dinner tonight, I was still self-conscious, and this time I did wonder if other diners might just casually look over and think my hat was unusual. I found that the full-head coverage and tie closure were helpful, because they made the hat feel secure, so I wasn't constantly fussing with exposed hair, or scratching at my itchy scalp, or re-positioning the hat, which I think I might do if I were wearing just a regular beanie hat. (They are cute, and I'd be open to wearing them, if I ever managed to drag myself shopping).
Overall, I found wearing the headcover to be less distracting to the actual dining experience than not wearing a headcover.
Taking my nurse's advice, I'm going to start wearing the headcover at home all the time, so I get used to the feeling. With the weather getting colder, it's great that it keeps me warm, too!
I put together these photos to show my hair loss progression in one view. I know the hair thinning might not look so bad from the front, and you can't really tell how thin it is in the photos. But compared to what I'm used to, it's super dramatically different, and it sucks. The hat does give me a feeling not exactly of control, but like, a little bit of empowerment through resigned acceptance, if that makes any sense.
Friday, November 15, 2019
11/15/19: Chemo Cycle #7 of 12 + Social Worker Visit + (12 Weeks Post-DMX) Physical Therapy Appointment #8
Ken dropped me off today so he could teach a double lab in the middle of the day.
I had a 9:45 appointment to get my port accessed and blood drawn. The port nurse noticed that my skin was irritated again, and I told her I've been alternating between bandaids and gauze with medical tape to cover the incision with antibiotic ointment. She agreed that the incision looks better. She said she sees every port that goes through the Cancer Center, and she's noticed an increase in the number of incisions that don't heal well. She's been keeping track of all new ports starting from a couple months ago, and I'm one of her data points! A whopping 55% of new ports have had issues. She thinks it may be related to stitches poking through and not dissolving properly. Anyway, she's reporting her data to the appropriate people at the hospital, and she says they are looking into it. It feels pretty great to know there are nurses like her who are actively trying to improve patient care!
We chatted a bit about my hair loss, too. She said that years ago, the Cancer Center used to provide their patients with cold caps, to help prevent hair loss. But they stopped at some point because of a concern that the cold that prevents hair loss also prevents the chemotherapy drug from circulating in the scalp, which may actually increase the likelihood of stray cancer cells surviving in the scalp. So one perspective is to look at hair loss as evidence that at least the chemotherapy is doing it's job; if it's killing fast-growing hair follicles, hopefully it's also killing cancer cells lurking in the scalp.
With my port accessed, I went upstairs to the infusion room, and the medical assistant took my vitals. She showed me to my bay around 10:15, and she set me up with a pillow and a warmed blanket, as usual. I ordered my lunch, plus one for Ken since he'd be joining me later.
My infusion nurse came in to ask about my weekly side effects, and suddenly the tears just started falling. She sat down and was very comforting. She reassured me that losing my hair is a kind of loss, and so there is a grieving process. I heard the same advice about losing my breasts when I had my surgery. It's just a lot to deal with, especially at the same time.
She asked if I had considered a wig, and I said I'm not really up for that option. She suggested again that I could cut my hair shorter, it might make the thinning less visible. I don't know, I'm just not feeling a hair cut, either. Basically, if I want to do something about the hair thinning, the options come down to getting a short hair cut, wearing a wig, or wearing a headcover like a scarf or hat; just none of them feel like "me". So the "best" option feels more like the least uncomfortable, least drastic option. My nurse encouraged me to get some hats, like a bunch of beanie-style hats in all different colors, and just wear them all the time so I get used to wearing them myself. Without my even mentioning it, she touched upon my hesitation to wear a hat to dinner last night (I didn't), and also suggested getting a more formed hat for when a winter beanie or baseball cap wouldn't feel appropriate, like when going out to a nice restaurant.
Anyway. I took my pre-meds around 10:30. My nurse said we would have to wait for my doctor to put in new orders, and then wait for the pharmacy to prepare the drugs. In the meantime, she got my IV set up, and took a look at the port incision through the clear dressing. She said it does look better, and to keep using the antibiotic ointment, since it still looks like it has some more healing to do.
Around 11:00 the social worker stopped by for a brief but helpful visit. (She just happened to see me while passing through the infusion room, but had another appointment coming up.) She sat down and asked me how my week went, and again the tears just came. She gave me some much needed comfort, saying that even though side effects can be predicted, that doesn't make them any easier when they happen. She also pointed out that hair loss in particular is so visible and drastic that it makes the whole idea of being in cancer treatment feel more real. I think that's especially true for me, because with other side effects being "mild" and not visible, and not experiencing any nausea at all (knock on wood), I kept thinking I was getting off easy, which makes this dramatic manifestation of cancer treatment feel all that more distressing.
My physical therapist came in at 11:15. She worked on my cording, and then declared it resolved! She said she couldn't feel it anymore. She also took measurements of my range of motion, so now I have objective data that my range has improved to be within the low end of being fully functional. Yay!
She took a peek at my incision scars, and said they are healing really well. I've been massaging them as instructed sort of intermittently; it just feels weird when I touch them. I'm supposed to keep up with the massaging as much as I feel comfortable, and also continue to stretch, since I still feel a lot of tightness, a little soreness, and my range of motion has room for improvement. We decided to set up a follow-up appointment in December to see how things are going, and we'll have that appointment in her regular exam room so there is more privacy for her to work on my scars.
I started the Herceptin around 11:30, during the physical therapy visit, and then started Taxol around 12:00.
Once finished, the nurse gave me my blood work report. My Im Gran (Immature Granulyte) is still a little high, a bit higher than last time. For the first time, my Monos (Monocyte) number is out of range on the low side. I kind of wonder if the healing action going on in my port incision is affecting these numbers. Also for the first time, one of my liver numbers, TotProt (Total Protein count of albumin and globulin, which are both within range), is very slightly out of range on the low side. I guess all this is normal during chemotherapy, so I'm not worried about anything, just find it an interesting exercise to track my blood work.
My nurse also gave me a note with instructions to call the cardiology department for an echocardiogram appointment. I need an echocardiogram every 3 months, I think because Herceptin can weaken the heart. (I called and they said they need to get insurance pre-authorization first, so they will call me back once they have it.)
Ken hadn't returned yet, so at 1:15, with his lunch in hand, I went downstairs to wait in the larger waiting area downstairs. Not counting the time I had to wait for Ken, this appointment was about 3 1/2 hours.
I had a 9:45 appointment to get my port accessed and blood drawn. The port nurse noticed that my skin was irritated again, and I told her I've been alternating between bandaids and gauze with medical tape to cover the incision with antibiotic ointment. She agreed that the incision looks better. She said she sees every port that goes through the Cancer Center, and she's noticed an increase in the number of incisions that don't heal well. She's been keeping track of all new ports starting from a couple months ago, and I'm one of her data points! A whopping 55% of new ports have had issues. She thinks it may be related to stitches poking through and not dissolving properly. Anyway, she's reporting her data to the appropriate people at the hospital, and she says they are looking into it. It feels pretty great to know there are nurses like her who are actively trying to improve patient care!
We chatted a bit about my hair loss, too. She said that years ago, the Cancer Center used to provide their patients with cold caps, to help prevent hair loss. But they stopped at some point because of a concern that the cold that prevents hair loss also prevents the chemotherapy drug from circulating in the scalp, which may actually increase the likelihood of stray cancer cells surviving in the scalp. So one perspective is to look at hair loss as evidence that at least the chemotherapy is doing it's job; if it's killing fast-growing hair follicles, hopefully it's also killing cancer cells lurking in the scalp.
With my port accessed, I went upstairs to the infusion room, and the medical assistant took my vitals. She showed me to my bay around 10:15, and she set me up with a pillow and a warmed blanket, as usual. I ordered my lunch, plus one for Ken since he'd be joining me later.
My infusion nurse came in to ask about my weekly side effects, and suddenly the tears just started falling. She sat down and was very comforting. She reassured me that losing my hair is a kind of loss, and so there is a grieving process. I heard the same advice about losing my breasts when I had my surgery. It's just a lot to deal with, especially at the same time.
She asked if I had considered a wig, and I said I'm not really up for that option. She suggested again that I could cut my hair shorter, it might make the thinning less visible. I don't know, I'm just not feeling a hair cut, either. Basically, if I want to do something about the hair thinning, the options come down to getting a short hair cut, wearing a wig, or wearing a headcover like a scarf or hat; just none of them feel like "me". So the "best" option feels more like the least uncomfortable, least drastic option. My nurse encouraged me to get some hats, like a bunch of beanie-style hats in all different colors, and just wear them all the time so I get used to wearing them myself. Without my even mentioning it, she touched upon my hesitation to wear a hat to dinner last night (I didn't), and also suggested getting a more formed hat for when a winter beanie or baseball cap wouldn't feel appropriate, like when going out to a nice restaurant.
Anyway. I took my pre-meds around 10:30. My nurse said we would have to wait for my doctor to put in new orders, and then wait for the pharmacy to prepare the drugs. In the meantime, she got my IV set up, and took a look at the port incision through the clear dressing. She said it does look better, and to keep using the antibiotic ointment, since it still looks like it has some more healing to do.
Around 11:00 the social worker stopped by for a brief but helpful visit. (She just happened to see me while passing through the infusion room, but had another appointment coming up.) She sat down and asked me how my week went, and again the tears just came. She gave me some much needed comfort, saying that even though side effects can be predicted, that doesn't make them any easier when they happen. She also pointed out that hair loss in particular is so visible and drastic that it makes the whole idea of being in cancer treatment feel more real. I think that's especially true for me, because with other side effects being "mild" and not visible, and not experiencing any nausea at all (knock on wood), I kept thinking I was getting off easy, which makes this dramatic manifestation of cancer treatment feel all that more distressing.
My physical therapist came in at 11:15. She worked on my cording, and then declared it resolved! She said she couldn't feel it anymore. She also took measurements of my range of motion, so now I have objective data that my range has improved to be within the low end of being fully functional. Yay!
She took a peek at my incision scars, and said they are healing really well. I've been massaging them as instructed sort of intermittently; it just feels weird when I touch them. I'm supposed to keep up with the massaging as much as I feel comfortable, and also continue to stretch, since I still feel a lot of tightness, a little soreness, and my range of motion has room for improvement. We decided to set up a follow-up appointment in December to see how things are going, and we'll have that appointment in her regular exam room so there is more privacy for her to work on my scars.
I started the Herceptin around 11:30, during the physical therapy visit, and then started Taxol around 12:00.
Once finished, the nurse gave me my blood work report. My Im Gran (Immature Granulyte) is still a little high, a bit higher than last time. For the first time, my Monos (Monocyte) number is out of range on the low side. I kind of wonder if the healing action going on in my port incision is affecting these numbers. Also for the first time, one of my liver numbers, TotProt (Total Protein count of albumin and globulin, which are both within range), is very slightly out of range on the low side. I guess all this is normal during chemotherapy, so I'm not worried about anything, just find it an interesting exercise to track my blood work.
My nurse also gave me a note with instructions to call the cardiology department for an echocardiogram appointment. I need an echocardiogram every 3 months, I think because Herceptin can weaken the heart. (I called and they said they need to get insurance pre-authorization first, so they will call me back once they have it.)
Ken hadn't returned yet, so at 1:15, with his lunch in hand, I went downstairs to wait in the larger waiting area downstairs. Not counting the time I had to wait for Ken, this appointment was about 3 1/2 hours.
Thursday, November 14, 2019
11/14/19: Cycle 6 Side Effects
Omg. Just last week, I was feeling okay with my hair thinning. I figured, if this is as bad as it gets, I can handle it.
But now it's worse. Pictures really do not convey just how disturbingly thin my hair is now.
My part is very pronounced. I concede that it's not so bad from the front. (All my hair is pushed in front of my shoulders for this photo.)
From the back, though... My part now extends all the way to the back of my head, and it ends in not exactly a bald spot, but like a bald line.
I'm going out to dinner with a friend tonight, and I can't decide if I should wear a headcover or not. I did buy a couple options from Headcovers Unlimited. I need to figure out if I would feel more self-conscious about a bald line or a headcover. I don't have any stylish hats. I do have a few baseball hats, but I think I'd feel equally self-conscious in any kind of headwear, since I don't normally wear any.
Meanwhile, my sense of taste continues to change. We had pasta with a tomato sauce on Sunday, and I was cautious in case it tasted metallic like last week's ketchup. Instead, it was just plain bland! I made dinner myself, and I know how much salt, pepper, basil, and oregano I put in. I couldn't taste any of it, and Ken said it was definitely just me. Weird, but I guess food tasting bland is better than it tasting like metal.
I still have an almost constant background headache, blurry vision, blood in stuffy/runny nose, acne, and occasional mild neuropathy. Tiredness / fatigue continues to span Sunday through Wednesday.
I feel so relieved that I'm not working this year, so I can just hibernate at home, and only go out when I want to.
But now it's worse. Pictures really do not convey just how disturbingly thin my hair is now.
My part is very pronounced. I concede that it's not so bad from the front. (All my hair is pushed in front of my shoulders for this photo.)
From the back, though... My part now extends all the way to the back of my head, and it ends in not exactly a bald spot, but like a bald line.
I'm going out to dinner with a friend tonight, and I can't decide if I should wear a headcover or not. I did buy a couple options from Headcovers Unlimited. I need to figure out if I would feel more self-conscious about a bald line or a headcover. I don't have any stylish hats. I do have a few baseball hats, but I think I'd feel equally self-conscious in any kind of headwear, since I don't normally wear any.
Meanwhile, my sense of taste continues to change. We had pasta with a tomato sauce on Sunday, and I was cautious in case it tasted metallic like last week's ketchup. Instead, it was just plain bland! I made dinner myself, and I know how much salt, pepper, basil, and oregano I put in. I couldn't taste any of it, and Ken said it was definitely just me. Weird, but I guess food tasting bland is better than it tasting like metal.
I still have an almost constant background headache, blurry vision, blood in stuffy/runny nose, acne, and occasional mild neuropathy. Tiredness / fatigue continues to span Sunday through Wednesday.
I feel so relieved that I'm not working this year, so I can just hibernate at home, and only go out when I want to.
11/14/19: I Think My Port Incision is Finally Healing
I've been putting triple antibiotic ointment on my port incision as instructed by my infusion nurse last week, and I think it's really helped.
Before using the antibiotic, the incision never really closed. It had what looked like 2 small scabs preventing the skin from closing, except they weren't really scabs, because they never fully hardened or fell off. (I considered posting a photo, but it's kind of gross, and I don't think there's any educational value in it.)
The incision always looked angry, a little red, a little swollen. It made me uneasy. But it didn't hurt, it wasn't warm to the touch, and I didn't have a fever. At least one medical professional looked at it on a weekly basis and said it didn't look infected, so I figured I was just healing slowly for some reason.
At first I was using Glad Press 'n Seal to keep the antibiotic ointment in place, because bandaids were irritating my skin. Then I suddenly realized that using Glad Press 'n Seal probably wasn't a good idea, because it's not sterile! Geez. I switched to using a gauze pad and medical tape. I don't know why I didn't think of that before.
Apparently, I managed to stumble upon the proper way to treat a wound (though I'm using an antibiotic instead of plain Vaseline because it's what my nurse said to do). I wasn't thinking of my incision as a "wound", but I think that's what was going on, since the incision hadn't closed properly. The ointment softened the 2 non-scab things; they turned white and mushy (ew...), and after a few days, they came off with just a bit of gentle help with a Q-tip.
Before using the antibiotic, the incision never really closed. It had what looked like 2 small scabs preventing the skin from closing, except they weren't really scabs, because they never fully hardened or fell off. (I considered posting a photo, but it's kind of gross, and I don't think there's any educational value in it.)
At first I was using Glad Press 'n Seal to keep the antibiotic ointment in place, because bandaids were irritating my skin. Then I suddenly realized that using Glad Press 'n Seal probably wasn't a good idea, because it's not sterile! Geez. I switched to using a gauze pad and medical tape. I don't know why I didn't think of that before.
Apparently, I managed to stumble upon the proper way to treat a wound (though I'm using an antibiotic instead of plain Vaseline because it's what my nurse said to do). I wasn't thinking of my incision as a "wound", but I think that's what was going on, since the incision hadn't closed properly. The ointment softened the 2 non-scab things; they turned white and mushy (ew...), and after a few days, they came off with just a bit of gentle help with a Q-tip.
I think the incision looks better than before; at least it looks like it's closed. But it's still kind of red and raw, so I'm still using the antibiotic ointment. We'll see what my nurse says tomorrow.
Wednesday, November 13, 2019
(Book Review) Dear Friend: Letters of Encouragement, Humor, and Love for Women with Breast Cancer by Gina L. Mulligan
I received this book in the mail from a friend. It's the perfect gift to encourage and support someone living with breast cancer, especially if they are newly diagnosed or currently undergoing active treatment. It's not really a book in the traditional sense, so it was hard to rate, but I gave it 4 stars on Goodreads.
A lovely collection of short letters to encourage and support women who have breast cancer. (Though men can and do get breast cancer, many of the letters assume the reader is a woman, as the book's subtitle indicates.)
A friend gave me this book when I was undergoing chemotherapy for breast cancer, and it was just what I needed to feel supported. It makes a perfect gift.
Most of the letters are written by women, some of whom are fellow survivors. There are a few letters here and there from men and children. I was impressed to find that letters from teenagers showed remarkable wisdom. In my reading, for every letter that did not quite resonate with me, there was at least one other that said exactly the words I needed to hear/read.
It's probably best not to read this book cover-to-cover in one sitting; instead, keep it nearby and pick it up whenever you need a little comfort.
Overall extremely uplifting, but with a twinge of bittersweetness with the realization that complete strangers were able to provide more meaningful support than some of my own friends and family. Then again, these letters must have been carefully curated out of thousands to include only the most powerful and heartfelt words.
It's worth noting that all the letters in this book are printed as they were originally handwritten. I loved the beautiful pages of colorful stationery and doodles, and I enjoyed each letter-writer's unique penmanship. It occurs to me that maybe a younger generation of survivors might not appreciate the handwriting as much, since many schools no longer teach cursive.
A lovely collection of short letters to encourage and support women who have breast cancer. (Though men can and do get breast cancer, many of the letters assume the reader is a woman, as the book's subtitle indicates.)
A friend gave me this book when I was undergoing chemotherapy for breast cancer, and it was just what I needed to feel supported. It makes a perfect gift.
Most of the letters are written by women, some of whom are fellow survivors. There are a few letters here and there from men and children. I was impressed to find that letters from teenagers showed remarkable wisdom. In my reading, for every letter that did not quite resonate with me, there was at least one other that said exactly the words I needed to hear/read.
It's probably best not to read this book cover-to-cover in one sitting; instead, keep it nearby and pick it up whenever you need a little comfort.
Overall extremely uplifting, but with a twinge of bittersweetness with the realization that complete strangers were able to provide more meaningful support than some of my own friends and family. Then again, these letters must have been carefully curated out of thousands to include only the most powerful and heartfelt words.
It's worth noting that all the letters in this book are printed as they were originally handwritten. I loved the beautiful pages of colorful stationery and doodles, and I enjoyed each letter-writer's unique penmanship. It occurs to me that maybe a younger generation of survivors might not appreciate the handwriting as much, since many schools no longer teach cursive.
Tuesday, November 12, 2019
11/12/19: I Gave Up on Stitch Fix
After buying only 4 items in 5 fixes (each fix offers 5 pieces), one of which was a pair of jeans, I've decided to stop my Stitch Fix deliveries.
I blame myself for the lack of purchaseable items in the first fix. I asked for clothes that would "fit and flatter my new body," but they must have read that to mean "accentuate a flat chest." Ha.
The next time, I made it clear I wanted clothes that would hide both a flat chest and a slightly protruding belly, going so far as to say I was interested in scarves, cowl necks, ruffles, draping material, and layers.
One fix had multiple items with "darts" sewn in for breasts. In my feedback I pointed out what I thought should have been obvious, that any top that was cut specifically to accommodate breasts would not work for me.
Another fix had multiple items with 3/4-length sleeves, even though my "Style Profile" clearly says I do not like 3/4-length sleeves. After that, I added a note to each fix asking the stylist to please read my "Style Profile"!
The last couple fixes, I do think the stylist tried. The options were better, but still nothing I could get excited about.
Oh, well. I'm still a fan of Stitch Fix in general; I'll keep my account and maybe try again in a few months. I'm sure styling me must be challenge, since I'm not an adventurous dresser and post-DMX fashion isn't exactly a thing. (There was one designer I found who specialized in it, but she's out of business now.)
Ken suggested I try Amazon Prime Wardrobe. I think it's worth a shot. I don't enjoy shopping, and going out to stores is like a last resort for me.
Ken suggested I try Amazon Prime Wardrobe. I think it's worth a shot. I don't enjoy shopping, and going out to stores is like a last resort for me.
Saturday, November 9, 2019
11/9/19: I Picked Up a Prescription + I Checked My Insurance Claims Online
Since we've already met our deductible, the "You Pay" amounts for these claims were all $0. The numbers listed below are the "Claim Total" amounts.
10/8/19: OB/GYN Appointment: $364.00
10/18/19: Chemotherapy Cycle #3 (Including Blood Work, Medical Oncologist Appointment, Flu Shot, Physical Therapy Appointment #4): $9,405.31
10/25/19: Chemotherapy Cycle #4 (Including Blood Work, Physical Therapy Appointment #5): $7,034.71
11/1/19: Chemotherapy Cycle #5 (Including Blood Work, Lupron, Physical Therapy Appointment #6): $7,648.48
I got a refill for 3 months of loratadine, which was not covered by insurance, so that was an out-of-pocket expense.
11/8/19: Loratadine Prescription (3-Month Supply): $27.20
I got a refill for 3 months of loratadine, which was not covered by insurance, so that was an out-of-pocket expense.
Total cost to date: $115,223.14
With insurance, cost to me: $4,229.43
Friday, November 8, 2019
11/8/19: Chemo Cycle #6 of 12 + Medical Oncologist Appointment + (11 Weeks Post-DMX) Physical Therapy Appointment #7
With today's treatment, I'm halfway finished with chemo!
My 8:15 appointment was the earliest it's ever been. Accounting for traffic, we left the house at 7:15, before the kids usually wake up for school. But today we made sure they were up before we left the house, and a friend in town drove them to school. Ken took the day off and drove today.
I got my port accessed (I could feel a small pinch, so I guess I didn't use enough numbing cream today), had some blood drawn, had my vitals taken, then went in for an appointment with my medical oncologist.
I mentioned that I've noticed my blood pressure has gone up. My pre-chemo blood pressure was always something in the 110s over something in the 60s. Now it ranges anywhere from the 110s-130s over 60s-80s. I guess it's still in the normal range, so not considered concerning, but it's still relatively high for me. My oncologist said the steroid can cause high blood pressure, and also just the stress of having cancer and being in active treatment can be a factor. Apparently both Taxol and Herceptin can cause high blood pressure, too.
I asked her for her thoughts on whether or not I can drive myself to future appointments, and she said it's really up to me, if I feel up to it. She did confirm that my chemo regimen is not expected to change.
The most important part of these appointments, I think, is for me to report my side effects, so she can make sure I am tolerating the treatment. If any side effects are too severe, she could adjust my medication doses, or prescribe additional medications to manage side effects. Anyway, all my side effects are so relatively mild that it sort of felt like I was looking for things to report! I guess I'd call that a good thing. My oncologist was pleased with how well things have been going.
She said to continue with the loratadine, since does seem to help with the cough.
She did a physical exam, and looked at my surgery incisions. She said what's left of the tiny stitch didn't look infected, so instead of triple antibiotic ointment, I could use Aquafor. But I shouldn't use a bandaid to cover it up, because she could see my skin was getting irritated. (Later at home, I discovered that a small piece of Glad Press 'n Seal works as a great bandaid alternative for just keeping the ointment in place and off my clothes.)
I mentioned that the area around the port was achy today, and I suspect I didn't put enough numbing cream on it. She said to just go ahead and be generous with how much cream to use, and instead turned her focus to the port incision. She said it doesn't seem to be healing well. I was glad she noticed, actually, because I've been disappointed in the way it looks; I'm anxious for it to heal, but it's not a smooth scar. There are still a couple small places where a scab hasn't fully formed, so it can't fall off. I'm not sure what's going on there. She said it doesn't look infected, so really there's not much to do but wait and see. Ken says they will cut me open in the same place anyway when my port gets removed, so I can just hope that the surgeon who does the removal does a better job with closing the incision! I mean, I guess that's true, but I'll still have my port for almost a year, so it doesn't make me feel much better about right now.
Finally, I'll mention that she looked at my nails, and reminded me to keep them cut short. I don't remember being told to do this before, so I looked it up when I got home. I found a helpful page from Memorial Sloan Kettering Cancer Center about how Taxol might affect nails, and what I can do to try to prevent nail changes.
I got settled in my infusion bay around 9:45, and started my pre-meds at 10:00.
My regular infusion nurse was back, and she gave me some of her thoughts on hair thinning. She said I definitely shouldn't shave it all off, because she still thinks I won't lose it all. She said she thinks my hair still looks good, that the thinning really isn't noticeable to other people. She said I could cut my hair shorter if I want it to look fuller, but I should only do it if I want to. I really appreciate how she and last week's nurse presented some options, but then reminded me that it's always up to me, that I should do what feels best for me.
When I asked my infusion nurse about whether or not I can drive myself in the future, she was quick to say that she definitely thinks I can. The concern is mostly about the Benadryl pre-med making me drowsy, but by the time I leave, I should have a good feel for whether or not I'm alert enough to drive. She suggested I do a trial run and drive home on a day when Ken is with me, so he can both observe me and be a back-up if I don't think I can do it.
My physical therapist came in around 10:30, and I started the Herceptin soon after.
The physical therapist worked on my cording for just a little while. She said it's so small now, maybe it'll be gone by next week. I told her about the muscle soreness I was feeling along my ribs, but around back. She was able to identify the muscle, and she gave me a new stretch to help that particular area. She also gave me a recommendation to follow a physical therapist on Instagram who is certified for oncology and lymphedema. She posts a lot of suggestions for stretches, including helpful videos.
I started Taxol around 11:15.
An hour later, a different nurse de-accessed my port, then looked curiously at my port incision, saying it looked red. She had my assigned infusion nurse look at it. My infusion nurse said it didn't look infected, said it's clearly still healing, and maybe there was a stitch or two not dissolving. She suggested I use some triple antibiotic ointment on it, and see if it helps. Ken mentioned that I had said I accidentally got some of the numbing cream into the incision today. She said it's okay, I should try to avoid doing that, but a bit of accidental exposure shouldn't be problematic.
My infusion nurse also brought me my blood work. 3 numbers were just slightly out of range: Baso (Basophil) was a little high, Im Gran (Immature Granulyte) was a little high, and AbsLymp (Absolute lymphocyte) was very slightly low. They're all related to white blood cell count, so they have to do with possible infection, or maybe even allergies. My medical oncologist had particularly asked me if I might have any kind of infection (I don't), and I wonder if these numbers helped prompt that question. Still, she said my overall numbers were good, so mostly I'll take these counts as a reminder to keep up with my handwashing and water drinking and other preventative measures.
We left just after 12:30, which means total visit time was about 4 1/2 hours. Incidentally, we did not get a free lunch today! Guess we finally stumbled on a time frame that didn't warrant it. Haha. Ken and I had a nice lunch out, and then we went to a nearby Costco. Surprisingly, we ran into a friend from town, spent some time catching up with her, and she said she wouldn't have known I had lost a lot of hair if I didn't tell her. That was nice to hear. She's a pretty straight shooter, so I think she meant it.
My 8:15 appointment was the earliest it's ever been. Accounting for traffic, we left the house at 7:15, before the kids usually wake up for school. But today we made sure they were up before we left the house, and a friend in town drove them to school. Ken took the day off and drove today.
I got my port accessed (I could feel a small pinch, so I guess I didn't use enough numbing cream today), had some blood drawn, had my vitals taken, then went in for an appointment with my medical oncologist.
I mentioned that I've noticed my blood pressure has gone up. My pre-chemo blood pressure was always something in the 110s over something in the 60s. Now it ranges anywhere from the 110s-130s over 60s-80s. I guess it's still in the normal range, so not considered concerning, but it's still relatively high for me. My oncologist said the steroid can cause high blood pressure, and also just the stress of having cancer and being in active treatment can be a factor. Apparently both Taxol and Herceptin can cause high blood pressure, too.
I asked her for her thoughts on whether or not I can drive myself to future appointments, and she said it's really up to me, if I feel up to it. She did confirm that my chemo regimen is not expected to change.
The most important part of these appointments, I think, is for me to report my side effects, so she can make sure I am tolerating the treatment. If any side effects are too severe, she could adjust my medication doses, or prescribe additional medications to manage side effects. Anyway, all my side effects are so relatively mild that it sort of felt like I was looking for things to report! I guess I'd call that a good thing. My oncologist was pleased with how well things have been going.
She said to continue with the loratadine, since does seem to help with the cough.
She did a physical exam, and looked at my surgery incisions. She said what's left of the tiny stitch didn't look infected, so instead of triple antibiotic ointment, I could use Aquafor. But I shouldn't use a bandaid to cover it up, because she could see my skin was getting irritated. (Later at home, I discovered that a small piece of Glad Press 'n Seal works as a great bandaid alternative for just keeping the ointment in place and off my clothes.)
I mentioned that the area around the port was achy today, and I suspect I didn't put enough numbing cream on it. She said to just go ahead and be generous with how much cream to use, and instead turned her focus to the port incision. She said it doesn't seem to be healing well. I was glad she noticed, actually, because I've been disappointed in the way it looks; I'm anxious for it to heal, but it's not a smooth scar. There are still a couple small places where a scab hasn't fully formed, so it can't fall off. I'm not sure what's going on there. She said it doesn't look infected, so really there's not much to do but wait and see. Ken says they will cut me open in the same place anyway when my port gets removed, so I can just hope that the surgeon who does the removal does a better job with closing the incision! I mean, I guess that's true, but I'll still have my port for almost a year, so it doesn't make me feel much better about right now.
Finally, I'll mention that she looked at my nails, and reminded me to keep them cut short. I don't remember being told to do this before, so I looked it up when I got home. I found a helpful page from Memorial Sloan Kettering Cancer Center about how Taxol might affect nails, and what I can do to try to prevent nail changes.
I got settled in my infusion bay around 9:45, and started my pre-meds at 10:00.
My regular infusion nurse was back, and she gave me some of her thoughts on hair thinning. She said I definitely shouldn't shave it all off, because she still thinks I won't lose it all. She said she thinks my hair still looks good, that the thinning really isn't noticeable to other people. She said I could cut my hair shorter if I want it to look fuller, but I should only do it if I want to. I really appreciate how she and last week's nurse presented some options, but then reminded me that it's always up to me, that I should do what feels best for me.
When I asked my infusion nurse about whether or not I can drive myself in the future, she was quick to say that she definitely thinks I can. The concern is mostly about the Benadryl pre-med making me drowsy, but by the time I leave, I should have a good feel for whether or not I'm alert enough to drive. She suggested I do a trial run and drive home on a day when Ken is with me, so he can both observe me and be a back-up if I don't think I can do it.
My physical therapist came in around 10:30, and I started the Herceptin soon after.
The physical therapist worked on my cording for just a little while. She said it's so small now, maybe it'll be gone by next week. I told her about the muscle soreness I was feeling along my ribs, but around back. She was able to identify the muscle, and she gave me a new stretch to help that particular area. She also gave me a recommendation to follow a physical therapist on Instagram who is certified for oncology and lymphedema. She posts a lot of suggestions for stretches, including helpful videos.
I started Taxol around 11:15.
An hour later, a different nurse de-accessed my port, then looked curiously at my port incision, saying it looked red. She had my assigned infusion nurse look at it. My infusion nurse said it didn't look infected, said it's clearly still healing, and maybe there was a stitch or two not dissolving. She suggested I use some triple antibiotic ointment on it, and see if it helps. Ken mentioned that I had said I accidentally got some of the numbing cream into the incision today. She said it's okay, I should try to avoid doing that, but a bit of accidental exposure shouldn't be problematic.
My infusion nurse also brought me my blood work. 3 numbers were just slightly out of range: Baso (Basophil) was a little high, Im Gran (Immature Granulyte) was a little high, and AbsLymp (Absolute lymphocyte) was very slightly low. They're all related to white blood cell count, so they have to do with possible infection, or maybe even allergies. My medical oncologist had particularly asked me if I might have any kind of infection (I don't), and I wonder if these numbers helped prompt that question. Still, she said my overall numbers were good, so mostly I'll take these counts as a reminder to keep up with my handwashing and water drinking and other preventative measures.
We left just after 12:30, which means total visit time was about 4 1/2 hours. Incidentally, we did not get a free lunch today! Guess we finally stumbled on a time frame that didn't warrant it. Haha. Ken and I had a nice lunch out, and then we went to a nearby Costco. Surprisingly, we ran into a friend from town, spent some time catching up with her, and she said she wouldn't have known I had lost a lot of hair if I didn't tell her. That was nice to hear. She's a pretty straight shooter, so I think she meant it.
Thursday, November 7, 2019
11/7/19: Cycle 5 Side Effects
I continue to lose my hair at an alarming rate. It's like someone threw a whole wig into the trash.
I honestly can't believe I still have hair on my head. But I'll take it. I did already buy some headcovers just in case.
When I gather all my hair like for a ponytail, on Monday it felt about 1/2 as thick as usual. Today (Thursday), it feels at most maybe 1/4 as thick. It's very dramatic and unsettling to me. It's actually surprising how the hair thinning is not very visible.
It's comforting to know that other people probably can't tell, but then I do wonder if some people might underestimate or even dismiss the trauma of hair thinning, if it's not visible and short of total hair loss.
Here's a photo I took today. All my hair is pushed in front of my shoulders, so there's nothing hanging down my back. For comparison, this 9/13/19 post includes a photo from before chemo started.
I honestly can't believe I still have hair on my head. But I'll take it. I did already buy some headcovers just in case.
When I gather all my hair like for a ponytail, on Monday it felt about 1/2 as thick as usual. Today (Thursday), it feels at most maybe 1/4 as thick. It's very dramatic and unsettling to me. It's actually surprising how the hair thinning is not very visible.
It's comforting to know that other people probably can't tell, but then I do wonder if some people might underestimate or even dismiss the trauma of hair thinning, if it's not visible and short of total hair loss.
Here's a photo I took today. All my hair is pushed in front of my shoulders, so there's nothing hanging down my back. For comparison, this 9/13/19 post includes a photo from before chemo started.
My scalp continues to feel tight and sensitive, and I wonder if that mild background headache I have might have something to do with that, too.
Besides hair loss and headache, all the other usual side effects continue: blurry vision, blood in stuffy/running nose, acne, tiredness/fatigue from Sunday through Wednesday, and occasional mild neuropathy.
Last night, though, I did encounter a whole new side effect that the oncology nurse had warned me about: ketchup tasted just like metal. Not metallic-y ketchup, or tomato-y metal, just plain metal. So weird.
Saturday, November 2, 2019
11/1/19: Chemo Cycle #5 of 12 + Lupron + (10 Weeks Post-DMX) Physical Therapy Appointment #6
Today another friend drove me to my treatment. We have a lot of shared interests, so there was plenty to talk about! Again, it was a really pleasant way to pass the time, catching up with a friend. Just so funny that it's chemo that helped enable it.
My appointment was earlier than usual, so we budgeted extra time for traffic. The drive did take longer than usual, but we still arrived early. My port nurse called me in early at 9:00, but then we had a bit of a wait in the infusion room.
After getting my vitals measured, we were shown to a bay around 9:30, the time of my appointment. My usual nurse, with whom I had the appointment, was out, so I had a different infusion nurse for the first time.
I asked if there are any objective means to determine when I'm able to drive myself to treatments? Or if it's just a matter of me "feeling" like I can do it? She basically said it depends on whether or not I am still experiencing any side effects of Benadryl by the time I go home. I mentioned the weak arms I get after taking the pre-med pills. I think they're fine after a couple hours, but I'll pay more attention over the next couple weeks, when Ken will be driving me. I'll try to imagine if I would be okay driving myself. And I'll ask my usual nurse this question, too, to get her opinion.
I also told the nurse about my hair falling out. My friend said she couldn't tell my hair had thinned, so that was reassuring. The nurse gave me some suggestions on how to manage hair loss (e.g., put a towel on my pillow to help collect hairs that fall out while sleeping, consider cutting my hair short), and then also reminded me that it's entirely up to me to do what feels best for me. She had a gentle, compassionate way about her, and she ended her sentences with a friendly, supportive (not sympathetic) smile, and an occasional pat on my arm.
I started my pre-meds around 10:00, same regimen as before.
At 10:30, while I was still getting the Pepcid via my port, my physical therapist came in, and my friend returned to the waiting area. The physical therapist worked on my cording, and said she felt a few "snap". She seems to think the cording may subside in a few weeks.
I told her I hadn't really done much massaging of my scar tissue, as she instructed, because it feels weird. She said there's no rush to do that massaging now, I can wait until it's healed some more. She mentioned that if I wanted, I could pick up physical therapy again after chemo ends, and she could work on the scar tissue for me, and help me with stretching my chest muscles even more, beyond range of motion exercises.
About 10:50, during my physical therapy, the infusion nurse came in and started my Herceptin.
Started Taxol at 11:30, and started to wonder if we'd get our lunches before I was finished. I have to say, I really enjoy their chocolate chip cookies!
We did get our lunches, and my friend was able to eat hers when she stepped out to the waiting area again while I got my Lupron shot. That was around 12:45, and we packed up and left just before 1:00. I carried my lunch out and ate it at home.
Today's visit was about 4 hours, not including driving time.
Today's visit was about 4 hours, not including driving time.
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