12/29/19: My Mom Died

She lived with Parkinson's Disease for over 14 years. It was a very slow, very gradual decline, over many years. She developed a cough after Thanksgiving; her hospice nurse said it was possibly pneumonia from aspirating food. Then she had an infection, possibly tooth-related. Even with antibiotics, a nebulizer, and pain medications, it was too much. 

Last weekend, at the hospice nurse's suggestion, my sister and her family drove up. I visited every day. On Thursday night, my mom started making gurgling sounds as she breathed, and my dad called me to come over. (The gurgling is a typical sign of end of life, and is sometimes dreadfully called a "death rattle". It sounds as awful as you'd imagine, and is near unbearable to hear from someone you love.) I brought an overnight bag so I could stay as long as necessary. My father, sister, and I kept up with my mom's care around the clock, sleeping in short intervals. We were up early with my mom on Sunday morning, and we were all right by her side when she passed.

There is so much to do now. Thankfully, my dad, sister, and I are all here and can make the arrangements together; I think the tasks are too overwhelming for one person. There are so many decisions to make and things to do, at a time when a person is probably in the least likely position to want or be able to do anything.

Some people say that "bad things happen in threes". It's irrational, but I hope it's true, because I've just about had enough. I'm still in active treatment for breast cancer, my dad just started treatment for prostate cancer, and now my mom is gone. As much as I've appreciated the support and thoughts and prayers of others, I'm getting tired of needing them.

Like cancer, a death compels people to say, "Let me know what I can do to help." Well, if anyone really wants to do something to help, please consider making a donation to the Michael J. Fox Foundation for Parkinson's Research. There is no cure for Parkinson's Disease, but we desperately need one. It may be too late for my mom, but not for the 1 million Americans who live with Parkinson's, or the 10 million people worldwide.

12/26/19: Maintenance Herceptin #1 + Lupron + (4 Months Post-DMX) Physical Therapy #12

Today I had my first maintenance Herceptin appointment. It took a lot longer than I anticipated, which wasn't a problem, but good to know for future scheduling purposes.

My appointment was at 10:30 in the infusion room. As far as I knew, I didn't need blood drawn, and I didn't have my usual appointment with the port nurse. After checking in, I went directly to the infusion room, where a medical assistant took my vitals, and I got settled into a bay.

My appointments are usually on Fridays, but today's appointment was moved up a day for scheduling reasons unknown to me. I didn't have my regular infusion nurse, but one I had seen before during previous visits.

There was a bit of confusion because apparently I have a standing order for blood work "every 7 days", but since this appointment was a day earlier than when it was supposed to be (only 6 days from my last appointment), it wasn't clear if I needed my blood drawn or not.

The infusion nurse came in to access my port around 11:00. I get an orange wrist band every visit because of my allergy to chlorhexidine, and the nurse did ask me if I had any allergies. I told her about the rash I get from chlorhexidine, but when she set out the supplies for accessing my port, I didn't see any Betadine, the skin disinfectant my port nurse uses instead of chlorhexidine. I decided to mention it. She said, "Oh, that's right!" and left the bay to get some Betadine. Getting a rash isn't the worst thing in the world, but I'm glad I was paying attention.

The infusion nurse decided to go ahead and draw blood for lab work, just in case.

Around 11:30, the infusion nurse brought me my pre-meds. I said I thought I didn't need pre-meds when getting only Herceptin (no chemo), and she said it was just for the first maintenance Herceptin, because the 3-week dose is bigger than the weekly dose. As before, the pre-meds are meant to prevent an allergic reaction.

The prescribed pre-meds were all pills: 1 Claritin (loratadine), 1 Benadryl, 1 Pepcid, and 2 Tylenol. She asked if I took a Claritin this morning, and I said I did, which means I didn't need to take it again. But when she handed me the little plastic cup with all the pre-meds, I counted 4 different types of pills. I asked which pill was which, and she realized she gave me the Claritin by accident, even though we just talked about how I didn't need it! Again, an extra dose of Claritin isn't terrible, but it's a good thing I was paying attention.

About this time, my physical therapist came in. I told her how my nurse last week had commented on my right arm being swollen. She looked at my arms, held a thumb to each forearm for a minute to see if the skin responded differently when released, and decided she couldn't really say for sure. She said it's normal for the dominant arm to be up to 10% bigger. She took something like 8 circumference measurements along each arm, and said there's a computer program she uses that will make calculations and quantify how much bigger one arm is compared to the other. She said even if it's not swollen, it's good to have these measurements as a baseline, just in case, since having lymph nodes removed does put me at risk for lymphedema.

Just as the physical therapist was finishing up the measurements, around 12:00, the infusion nurse came in to start the Herceptin. I forgot that sometimes we have to wait a while for the hospital pharmacy to prepare and deliver prescriptions.

My physical therapist worked on my cording, and it definitely felt a lot better afterwards. It's still not gone, though, so even though I'm not coming in for weekly infusions, I'll still be back next week for physical therapy.

I finished the Hercerptin at 12:30.

The Lupron shot was quick.

I asked for a copy of my blood work results. Since the duration of my appointment was shorter than with chemo, some of the results were still pending and not available yet. The results I did get, related to my blood cell counts, were all values within the range of what I've seen before.

I ended up spending just over 2 hours in the Cancer Center today.

12/26/19: Cycle 12 Side Effects

As usual, this week was much the same as last week.

I am eager to see my chemo side effects wear off for good. I'm wondering how long it will take. How long until I stop seeing blood in my nose? Or until my vision returns to normal? Of course, I'm most anxious for my hair to grow back, and it's kind of disheartening to think about how long I will have to continue wearing hats, even now that chemo is finished. 

12/20/19: Chemo Cycle #12 of 12 + Medical Oncologist Appointment + (4 Months Post-DMX) Physical Therapy Appointment #11

Today was my last chemo infusion!!! Hooray!! At home tonight, we celebrated with a chocolate cake that Ken and the kids made for me, by request. Haha. They used a cake mix and store-bought frosting and it was delicious!!!!

My last chemo infusion just happened to coincide with the holiday season, so I prepared thank you / holiday gifts for everyone in the Cancer Center and Breast Center. I didn't think to take a proper picture at home, but I snapped this photo in the car before going in.

Each gift bag or mug is filled with tea bags, honey sticks, and candies. I put 12 gift bags into a basket, and gave a basket each to the Cancer Center 1st floor staff, Cancer Center 2nd floor staff, and Breast Center staff. The mugs I gave to people on my regular care team: port nurse, medical oncologist, infusion nurse, physical therapist, NP, and breast surgeon. I prepared a mug for my social worker, but she wasn't there today; I'll try again next week. I think the gifts went over well. At least, everyone accepted them graciously, and they brought a few smiles. (I also gave the mugs with goodies to friends who drove me to chemo and who drove my kids to school while Ken and I went to chemo.)

My 8:15 appointment with the port nurse was her first appointment of the day. Regarding my port, she mentioned that I should talk through all my options with my oncologist, including the possibility of removing the port and using a regular IV for my ongoing maintenance Herceptin infusions. I had actually come across that idea already in one of the Facebook support groups, and appreciated having it validated by the port nurse. Still, even though the maintenance infusions would be every 3 weeks, I feel like keeping the port would be worth it, to save my veins, if they could really ensure a clean closure this time.  

With my port accessed, I had to wait an extra half-hour for my oncologist, who was already running late. I saw her at 9:30, and she spent so much time with me - which I appreciated so much!! - that she was even more behind schedule when I left. Any time I see a doctor, whether for myself or my kids, I never get upset if they are running late; I figure, maybe they are taking some extra time to answer questions from patients, which is exactly what I would want them to do for me.

I asked if, and when, I should stop taking the loratadine (which I've been taking to address a dry cough I got while on chemo), and she said to take it for 3 more weeks, then stop.

Regarding my port, my medical oncologist said it's really so much more convenient for me to have the port; she didn't really entertain the idea of taking it out. I asked her how I could be sure that the interventional radiologist could really get a good result this time? What if I get re-sutured, and it still doesn't heal properly? What will they do differently? I guess part of me wonders if it's really necessary to keep trying to fix the incision, since it'll just be re-opened and re-sutured again when I get my port out. She said I should ask the interventional radiologist those questions, and I got the impression she didn't think it was an option not to fix it. She called it a quality issue. She said she personally has 5 current patients with the same problem, there are people looking into what is causing the increased frequency of this issue, and it's just something they need to get right. 

She said the only thing that concerned her was the timing of my appointment, in case they do perform a procedure to re-open the wound and re-suture everything. Since today was my last chemo, she suggested I move the appointment to any time in January. That would give my body and blood counts time to recover from chemo, so that hopefully chemo won't be a factor in the healing, as it has been this whole time since port placement. (Back at home this afternoon, I re-scheduled the appointment for the first week in January.)

My oncologist spent the majority of the time going over her decision to prescribe exemestane, an aromatase inhibitor (AI), instead of Tamoxifen, which we discussed at the last appointment. Since I have consistently fallen in an "intermediate risk" range, she went back to my medical records and went over my pathology from the beginning, including reviewing my Oncotype DX report in more detail. She even showed me a report on some clinical trials (the TEXT and SOFT trials), and a decision-making flow chart that can be used to help to determine treatment options. Even though my lymph nodes were clear (a sign of "low risk"), age 43 is still "young" (a sign of "high risk"), and the fact that I had bilateral cancer with two different types is unusual enough that she considered it a sign of "high risk". For whatever reason, my body just happened to be conducive to breast cancer; she likes to say that I had "busy breasts". 

I left the appointment feeling comfortable with the decision to take an AI. She reiterated that if the side effects are unbearable, I can always try Tamoxifen. She said she'd write the prescription at our next appointment in January, which means I'll have a few weeks' break with no chemo and no new hormone therapy. 

Up in my infusion bay, I started my pre-meds around 10:15. My physical therapist came in around the same time to work on my cording.

I started Herceptin at 10:45, and Taxol at 11:15. With my physical therapy out of the way, I got some reading done during the infusion.

At 12:30, my infusion nurse de-accessed my port. I mentioned my thoughts about whether or not it's really necessary to continue trying to fix the port incision, and she didn't hesitate to say it was. She said the open wound is a risk for infection, and also, once the warmer spring and summer months come around, I probably won't like having it on display, since it won't be so easy covering up with layers in hot weather. She also suggested I mention to the interventional radiologist that the skin glue didn't work on my original closure, so maybe sutures would be better. I'll definitely ask what they plan to do differently to ensure a clean closure this time.

Interestingly, my nurse also mentioned that my right arm looked swollen! She has a good eye. I was completely surprised, because I hadn't noticed, and the physical therapist hadn't mentioned anything. But back home this evening, Ken agreed my right arm looked "thicker" than my left. Of course, now that I'm aware, I'm noticing some slight tingling in my right hand. So, now I'm worried about lymphedema. I'll continue to do my stretches, and will mention the swelling to my physical therapist next week. (For the record, I have not been keeping up with my walking/biking exercises, and I wonder if that may be a factor in the swelling... I will try harder to get my exercising in!)

My blood work had several values slightly out of range, but nothing that hasn't already been seen at some point during my chemo. 

Incidentally, today my lunch arrived just as I was leaving at 12:45. At my nurse's suggestion, I ate my lunch in the "respite room", a little room with a table and chairs, like a small conference room. By the time I left, I had spent about 5 hours at the Cancer Center.

12/19/19: Cycle 11 Side Effects

All the same side effects as usual.

For the dry, red, bumpy, itchy rash on the back of my hands, I switched from using Aquafor to using Eucerin. It's gotten a lot better.

The most bothersome side effect this week was acne, which got a lot worse all over. I saw a thread in one of the Facebook support groups where all these women on chemo were thrilled because, despite everything else, at least their skin was clear and glowing! I had forgotten that the acne is most likely caused by either the Herceptin targeted therapy or the Lupron hormone therapy. So it's probably not going away any time soon. Ugh.

12/16/19: Phone Calls

Last Friday, my infusion nurse said she'd send the photo of my open port incision to the doctor who performed the original port placement to ask what to do about it.

I got a call this morning about setting up an appointment with the interventional radiology department at the main hospital in the city. (Incidentally, not the same number or address as either of the last two calls. I guess it's a pretty big hospital network.)

It wasn't clear to me what would happen at this appointment. I was told that a doctor would look at my incision (not sure if it'll be the same one who did my port placement and re-stitch), and just in case I need to undergo some kind of procedure, I should not eat or drink for 8 hours beforehand, and I should have a ride home.

Later in the afternoon, I got a call from my port nurse. I appreciate her so much!! She was basically acting like my point person, and wanted to make sure I knew what was going on. She saw that the internal email thread about setting up my appointment did not include my medical oncologist, and since I'm an active chemo patient, she thought it was important for my oncologist to sign off on any procedures I might get done. She said it sounded like they might want to re-open the line and re-suture the whole thing. (The re-stitch was an attempt to bring together the skin layer, but left the deeper layers alone.)

My interventional radiology appointment is next Monday, which apparently works out well because I have an appointment with my medical oncologist this Friday. She can look at my blood work, and the port incision, and help me figure out what to do.

(Book Review) Radical: The Science, Culture, and History of Breast Cancer in America by Kate Pickert

This new release is the most up-to-date book I've read about breast cancer. Because it is so current, I was both impressed with its presentation of new data and disappointed in its omission of relevant topics. I had a hard time rating this book. At times I was fascinated by what I read, and at other times I was bothered by what was not included. In the end I gave it 3 1/2 stars, but rounded down to 3 for Goodreads (since they don't allow 1/2 stars). 

This book intertwines the author's personal experiences with breast cancer with explorations of topics related to breast cancer.

There was a lot I liked about this book. Published just this year, it was up-to-date on modern advances and clinical trials. It picked up where Her2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer by Robert Bazell (published in 1998) and The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee (published in 2010) left off. For example, the book goes beyond the success of Herceptin, and introduces Perjeta and Kadcyla, two more recently developed targeted therapies for HER2-positive breast cancer.

I appreciated that the author shed light on some of the more controversial and little known aspects of breast cancer. The very first chapter presented eye-opening information on the fact that mammograms underdetect some cancers and overdiagnose others, particularly in younger women. The second-to-last chapter focused on metastatic breast cancer and, in the absence of a cure, the need for more treatment options that could better extend the lives of metastatic patients.  

I found the chapter on the Susan G. Komen foundation particularly interesting, from the beginnings of the pink ribbon to the criticisms they've received and their efforts to re-brand themselves in recent years. The book as a whole provided a keen juxtaposition of the celebratory images of pink-washed breast cancer "survivors" against the harsh reality of painful surgery, debilitating cancer treatment, and marginalized metastatic patients who know they will not survive the disease.

I also really enjoyed the chapter on Taxol, a federal funding for scientific research success story. The author humanized the history of Taxol by telling its story through the people who discovered and helped develop the drug. As a breast cancer patient currently receiving chemotherapy with Taxol, I feel personally grateful for every individual who helped bring the drug to market.

All that said, I couldn't really bring myself to give this book a higher rating. Topics varied widely, and though the book was loosely organized along a chronology of the author's experience from diagnosis through treatment, the narrative seemed to jump disjointedly from one subject to the next.

Several times, the text mentioned "a subtype of breast cancer", but then failed to identify the particular subtype in context. I found this lack of detail frustrating, especially when the book, in other places, did describe subtypes (e.g., estrogen-receptor-positive, HER2-positive, etc.). Not providing such clarifications in all contexts just made those sections seem arbitrarily vague.

The biggest issue I had with the book was its lack of discussion on the choice to not reconstruct after mastectomy surgery. Considering the book's bold presentation of other controversial topics, I think it was a disservice to not fully explore the path of non-reconstruction, i.e., "going flat", with the same validity as reconstruction, especially since the author states that "[n]early 40 percent of women who have mastectomies opt to have plastic surgery" (p. 233), which means that a 60% majority of women do not reconstruct. The author discusses at length her decision-making process for various parts of her treatment, but she did not at all address how or why she chose to reconstruct; it was considered a given.

I was particularly bothered by the chapter on reconstruction being titled "Whole Again", implying that a woman who has a double mastectomy is not "whole" unless they undergo reconstruction. As someone who had a double mastectomy and chose to go flat, I can say with confidence that I feel whole. I wish the author had interviewed breast surgeons who are skilled in flat closure, and I wish she had included the accounts of women who chose to go flat and how they made their decisions, including women who first had reconstructive surgery and then later decided to explant. For a book that seemed tapped into current trends, it was a glaring omission to not at all mention the existence of the "flat movement", including organizations like Flat Closure NOW, which helps to spread awareness and shed light on issues experienced by women who choose to go flat.

To a lesser extent, I also wish the author hadn't shied away from controversy related to cold-capping. Given the book's emphasis on empowering women with knowledge to make their own decisions, I think the book should have mentioned the possible risks, small as they may be.

Overall, a lot of valuable information makes this book a worthwhile read. I understand the topics in the book were driven by the author's personal experiences, but I still wish additional perspectives could have been included, too.

12/13/19: I Tried Lactaid Milk

I became lactose intolerant sometime in my 30s. (Being lactose intolerant means my body doesn't produce enough of the enzyme lactase to digest dairy products, leading to uncomfortable symptoms.)

With the help of lactase pills, I can still occasionally enjoy ice cream and pizza, as long as I have some pills on hand. It's not fool-proof, though; I'll still suffer if I don't take the right dose, and there's no clear formula for figuring that out. Usually I just guess at how many pills I might need for a "serving" of dairy.

I never really liked the taste of milk. As an adult, I used it mostly in cereal and hot chocolate. After I became lactose intolerant, I just stopped drinking milk. I'll eat dry cereal as a snack sometimes, and I switched to water for hot chocolate.

But now that I'm looking at the possibility of taking an aromatase inhibitor, which causes loss of bone density (increasing my risk for osteoporosis), I'm thinking about ways to increase my calcium intake. Ken suggested I finally give Lactaid milk a try.

Interestingly, with my chemo-induced lack of taste, when I sat down to eat a bowl of cereal with bananas and milk, the only thing I could taste was bananas. Since I never really cared for the taste of milk to begin with, I'm sure it'll be fine. I'm going to try to incorporate Lactaid into my regular diet.

12/13/19: Chemo Cycle #11 of 12 + Social Worker Visit + Echocardiogram Report + (Almost 4 Months Post-DMX) Physical Therapy Appointment #10

Warning: This post contains a photo of my unhealed port incision.

I drove myself again today. It was totally fine.

At my 10:00 port access appointment, the port nurse wasn't happy with the look of my port incision. It's not infected, which is always the primary concern, but it's definitely not closed. I don't know if it looks "better" than before, but maybe the stitches stimulated the skin layer to regenerate and start filling in the gap? I hope so. I just want it to heal, even if it heals into an ugly scar.

11 weeks after port placement.
1 week after stitches removed.
Entire incision not closed.
Using A&D ointment lightly.

I stopped by the restroom on my way to the infusion room, and by the time I saw my infusion nurse, the port nurse had already called her to talk about my port incision. It's not really in the wheelhouse of either nurse to know how best to handle an unhealed surgical incision, so my infusion nurse said she'd take another photo and send it to the doctor who stitched me up. She said at this point, maybe it would be helpful to have more information, like whether or not the scar could be "cleaned up" during the port removal surgery, and whether or not a plastic surgeon should be involved.

She confirmed that next week will be my last chemo session. Yay! I'm due for a Lupron shot the week after on December 27. She said I'll have one more weekly Herceptin at that same appointment, then starting from that date, I'll have maintenance Herceptin every 3 weeks. I'm still not clear on exactly how many maintenance Herceptin treatments I'll get, but she did say I'll get them until October 2020, one year from when I started Herceptin.

My nurse said I should expect the chemo side effects to linger for a few weeks, but once they go away, getting the maintenance Herceptin should be a lot easier. Almost all the side effects I've had are related to the chemo drug, Taxol. With only Herceptin, the only real concern is my heart function, which is monitored periodically with echocardiograms.

I mentioned that the neuropathy was more frequent than usual this week, but my infusion nurse said it wasn't a problem unless the neuropathy interferes with my ability to do regular activities, like walk or write. I didn't realize neuropathy could be so severe; it was a reminder of how lucky I am to have only mild neuropathy that's not disruptive to my quality of life. All I get is tingly toes that last a short while.

I started my pre-meds around 10:40. At 11:00 I started Herceptin, and my social worker came in shortly after for a brief visit.

We debriefed on Thanksgiving, and I told her how I've decided that for me personally, I would much prefer that other people say something rather than nothing. I get that some people don't say anything out of fear of saying something wrong, but ignoring the elephant in the room feels awkward to me, and honestly, it makes me feel like they don't care. In some cases, other people might not know if I'm the type of person who is okay with talking about cancer, but I would think that at least the people who know about this public blog would see it as an indicator that yes, I am comfortable talking about it. My social worker suggested I come up with a few lines I could say in case the other person doesn't say anything; something to acknowledge the elephant, show that it's okay to mention it, and either invite them to ask me questions if I feel like talking about it, or change the subject if I don't.

Preferably, though, it would be nice if the "burden" wasn't on me to break the ice. My infusion nurse actually said something before similar to what my social worker suggested, though she was addressing the question of what other people might say. She said ideally, in just a few lines, other people could acknowledge the cancer in some way (e.g., refer to the diagnosis, recent surgery, or current treatment), show love (e.g., give a hug, or say something supportive), and then move on (e.g., make a light comment that could potentially re-direct the conversation, which gives me an opening if I don't want to talk about it). I like those guidelines. I like that in both cases, whether it's me or the other person speaking, the elephant is acknowledged, and then you can play it by ear regarding whether or not to talk more about the cancer.

My social worker pointed out that the bottom line is that it's complicated. I get that. A person having cancer complicates relationships, and it's new territory for most people. I have to say, it makes sense that some of my most comforting and supportive interactions have come from people who have already had some kind of personal experience with cancer.

Before she left, my social worker asked if I've given any thought to requesting support from the Ellie Fund, since all requests need to go through her. I actually think I'm doing alright, but still, it's nice to know that kind of support is out there.

I ate my lunch during the Taxol, which started around 11:40. An hour later, my infusion nurse de-accessed my port, took a photo of my port incision, and gave me some printouts.

I am just realizing now that I forgot to post about my first echocardiogram report. I accessed it via the online patient portal a few days after the procedure. When my infusion nurse mentioned that my latest echo looked good, I asked for a copy of the report. I don't understand any of it, but I know the most important thing is the "ejection fraction". The report states that "normal" range is 54-73%. In my first echo, my ejection fraction was 63%. In my second echo, the ejection fraction was 61%. From what I've gathered in Facebook support groups, it's normal for the percentage to go down while getting Herceptin, just not too much. I assume I'm doing fine since my percentage only went down a little, and it's still in normal range.

My infusion nurse also gave me my blood work results. Today's report probably had the most measurements out of range, but almost all were only very, very slightly out of range. TotProt (Total Protein), Globulin, and Monos (Monocyte) were all very slightly low, similar to numbers in Cycle #7. Baso (Basophil) was slightly high, as it was in Cycle #6. And Im Gran (Immature Granulyte) continues to be a little high, as it has been in every cycle since Cycle #6. The only new one was RDWSD (Red blood cell Distribution Width Standard Deviation). This value is a measurement of red blood cell size, and my number was very slightly out of range on the high side. Apparently, the RDWSD value is typically compared to the MCV (Mean Corpuscular Volume), the average size of red blood cells, which was normal for me. High RDWSD and normal MCV could be an early sign of some kind of vitamin B12, folic acid, or iron deficiency. I'm figuring all these slightly out of range numbers might have something to do with the effects of chemo being cumulative. Good thing I'm almost finished.

I left the infusion room at 12:45, but I still had a physical therapy appointment at 1:00, which took place in the physical therapist's exam room. She worked on my cording while we chatted about the upcoming holidays. My right arm really feels a lot better after the cording massage!

I left the Cancer Center at 1:30, so altogether this visit was 3.5 hours.

12/12/19: Cycle 10 Side Effects

Same old side effects, plus the new rash on my hand:

• Dry, red, bumpy, itchy rash on the back of my hands
• Continued hair loss (I find tiny little stubble hairs on the bathroom counter.)
• Blurry vision
• Mild headache
• Blood in stuffy/runny nose
• Acne (face, back, and scalp)
• Dry mouth (on day 1 of cycle)
• Insomnia / Trouble sleeping
• Occasional mild neuropathy (occurred more frequently this week than previously)
• Tiredness / Fatigue (on days 3 through 6 of cycle)
• Changes in sense of taste (e.g., no sense of taste at all, or something tastes metallic; has not persisted beyond 1 meal at a time)

This week I was mostly pre-occupied by my port incision. It bums me out. It's completely open again. I don't know if the stitches came out too early, or if it was too late to re-stitch in the first place, or what. It's not quite as wide as it was before, and it does look like it's going through some stages of healing, so maybe the stitches did something. I just need to accept that it's going to be an ugly scar, and hope that there will be a way to ensure a better outcome when I get my port out.

It does occur to me that of all things to go wrong, having the port incision not heal is probably the least problematic of things that could have gone wrong. Thankfully, my DMX incisions are healing well, and chemo has been going fine, too. (Knock on wood.) It's probably a bit much to expect everything to go as planned, so if something has to go wrong, it might as well be a poorly healing port incision. 

12/11/19: Echocardiogram

This appointment went just like the first one, I even had the same technician. It took about 20 minutes.

I appreciated that when the technician was trying to get pictures of my heart from the side, by positioning the transducer between two ribs, she said it was a little tricky because I'm "skinny"! I just liked being thought of as skinny, since I've been feeling especially flabby.

12/8/19: 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.

10/3/19: Medical Oncologist Appointment: $363.00

11/8/19: Chemotherapy Cycle #6 (Including Blood Work, Medical Oncologist Appointment, Physical Therapy Appointment #7): $7,264.25

11/15/19: Chemotherapy Cycle #7 (Including Blood Work, Physical Therapy Appointment #8): $7,532.14

11/22/19: Chemotherapy Cycle #8 (Including Blood Work, Medical Oncologist Hospital): $7,396.14
11/29/19: Chemotherapy Cycle #9 (Including Blood Work, Lupron): $7,847.61

Total cost to date: $145,626.28

With insurance, cost to me: $4,229.43

12/7/19: I Shaved My Head

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

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

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

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

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

And here's what little hair I had left.

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

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

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

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

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

12/6/19: Chemo Cycle #10 of 12 + (3.5 Months Post-DMX) Physical Therapy Appointment #9 + Nurse Removed Port Incision Stitches

Warning: This post contains photos of my unhealed port incision.

Today I drove myself to chemo. I think it went fine! I'll plan to drive myself for the last two treatments.

I had a 10:45 appointment to get my port accessed, but the port nurse was running about 30 minutes behind schedule. The Cancer Center was super busy today, even the parking area was full. The port nurse said it's because the flu is going around early this year; patients are supposed to call their oncologist if they get a fever during chemo.

After getting my port acccessed, I was 30 minutes late for my physical therapy appointment. Luckily my physical therapist didn't have another appointment immediately after my original time, so she could still see me without much disruption to her schedule. She purposely scheduled this appointment before my infusion appointment so that we could meet in her exam room, making it easier to take measurements of my range of motion. It was very satisfying to see objective evidence of improvement!

Meeting in her exam room also gave us more privacy for her to look at my DMX incisions. She massaged them to help break down the scar tissue. The area is still numb, and tingly when touched, so it felt weird, but not in a ticklish way. She said I've healed really well; my incisions are nice and smooth, no bumpiness or puckering, which can sometimes happen. (There's a bit of extra skin at the outer end of each incision... They bother me, but I'm working on accepting them.)

I told her I was still feeling a kind of tightness in my right arm. She took a look and said it's cording again. She massaged the area, and it did feel a lot better afterward. She said she'd schedule me for another physical therapy visit next Friday, while I'm in the infusion room, to work on the cording some more.

I got to the infusion room around 12:00. My usual nurse had told me she'd be out, and I had the same substitute nurse I had once before.

I started my pre-meds around 12:15. Started Herceptin just after 12:45, and then Taxol at 1:30.

After the Taxol finished around 2:30, the nurse took out the port incision stitches. It took a while because the nurse said the stitches were really tight, she had a hard time cutting them. I figured that was a good sign that the stitches were done well, but when I finally had a chance to look at the incision at home (no mirror in the infusion bay), I was disappointed. The bottom half, maybe 2/3, looks closed. But a portion at the top is still open.

At this point, maybe a series of photos would be helpful. Here's what the incision looked like over time:

6 weeks after port placement.
Not healing, 2 spots not closed.
Started using antibiotic ointment.

8 weeks after port placement.
Entire incision not closed.
Stopped using antibiotic ointment.

9 weeks after port placement.
Incision closed tightly with stitches.

10 weeks after port placement.
Stitches removed after 9 days.
Inside circle, not closed.
Left of circle, a scab spans opening.
Left of scab, skin is closed.

I guess when I compare the little opening after stitches to the big opening before stitches, it's definitely an improvement. It's just kind of ironic how the two giant DMX incisions healed so smoothly, and this 1-inch incision is having so much trouble.

I wonder if the stitches were taken out too soon. From what I can gather, stitches on the chest area are generally removed in 7-14 days; mine were removed in 9 days, clearly within the range, but on the early side. I did some Googling, and I guess wounds opening up after stitches are removed is not uncommon. It sounds like, if "too much time" has passed, the opening won't be re-stitched, and the person just has to wait patiently for the wound to heal across the gap, which takes a long time (could be months) and results in a more prominent scar. In my case, these stitches are already the re-stitch, so a re-re-stitch seems unlikely. The re-stitch was a solid 2 months after the original surgery, too, so maybe it was already "too late", but they tried.

I was lamenting the potential scar, and my son said, "No, it's good to have battle scars! They prove that you've gone through hardships. You're badass!" (Reminds me of the meme I posted about my DMX incisions.)

I assume I will get another incision in essentially the same spot when my port comes out in about a year. However it heals now, it is what it is. The port removal procedure will leave me with the final scar, and there's still a chance to get a better result then. It's just unfortunate, and annoying, that it's not healing smoothly.

Anyway, circling back, I left around 3:00, so my visit today was over 4 hours, one of the longest. Thankfully, lunch was included.

Oh, there was something new on my blood test results. I had a value very slightly out of range on the high side for Phos (phosphate). As far as I can tell, phosphate is one measure related to kidney function. I guess it's weird that I want to look at my numbers when I don't understand them. But I like to check just in case some numbers go way out of whack. It's reassuring when they are mostly within or very near normal ranges.

12/7/19 Update: Spoke too soon. Woke up this morning to find the bottom part of the incision has opened up. Not as much as the top part, but it's definitely not closed, there's a gap. OH, WELL. 

12/5/19: Medical Oncologist Appointment

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

12/5/19: Cycle 9 Side Effects

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

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

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

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

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