What to Expect from Chemotherapy

I first drafted this post when I started chemo, and I meant to finish it just after finishing chemo, but it fell by the wayside. By now, I think I've forgotten some useful things I might have said if I had posted it earlier, but here goes.

These are my thoughts on what to expect if you're getting chemotherapy. Of course, experiences and treatments vary. I got 12 weekly infusions of a "low dose" of Taxol, plus Herceptin because I was HER2-positive. After that, I got a higher dose of maintenance Herceptin every 3 weeks for the remainder of a year. 

I think I was relatively lucky in terms of side effects, and I definitely got off easy in terms of not experiencing any nausea at all.

Understand Your Regimen and Schedule

Chemotherapy was recommended at my first meeting with my medical oncologist, and things moved quickly from there. Within days my husband and I had a "chemo teach" appointment with an oncology nurse who explained the process and answered all our questions. She provided complete information on my treatment schedule, all the drugs I would be getting (including pre-medications), expected side effects, and the prescriptions I would have to help manage side effects. This meeting was critical in setting my expectations for chemotherapy. She emphasized that my regimen was tailored to me, and every person experiences side effects differently, so I shouldn't compare my experience with that of others.

Two days after that meeting, I got my port installed. The aftermath of this procedure was actually more painful than I anticipated, but I felt better in about a week. 

The day after port placement, I got an echocardiogram because Herceptin can weaken the heart's pumping action. This echocardiogram would be my baseline, and my heart would be monitored by an echocardiogram every 3 months while on Herceptin. Getting the echocardiogram just one day after port placement, and 4 weeks after my double mastectomy surgery, I really couldn't lie on my side without pain, but the technician was very kind and accommodating, and was able to get the images without too much discomfort.

Before I knew it, one week later I was getting my first chemotherapy infusion.

Day of Treatment Routine

On the day of treatment, I made sure to wear a top that would allow easy access to my port. I could wear any shirt that was kind of stretchy, or had a V-neck, as long as it could be easily pulled aside to expose the port. Also, I made sure it was short-sleeved, since my blood pressure was taken at every visit, too.

About an hour before my appointment time, I used the prescribed numbing cream (lidocaine-prilocaine) for my port. The cream was thinner than I expected, and I was instructed to cover the bump of the port, located under the incision scar, so that it looked "like toothpaste". Over the weeks I found that it worked best if I didn't try to conserve it; just slather it on.

Then I covered the area with a square of Glad Press 'n Seal, so that the cream would stay in place and not get on my clothes.

At my Cancer Center, I usually first met with a nurse who accessed my port. With the numbing cream, I didn't feel a thing when the needle went in. (Sometimes I felt just a tiny poke if I presumably didn't use enough cream.) She drew blood via the port for blood work, which was checked each treatment to make sure I would be able to receive chemotherapy that day. (My numbers stayed within acceptable range, so I never needed to miss a dose.)

About every 2 or 3 weeks, after my port was accessed, I had an appointment with my medical oncologist. This was my opportunity to discuss any side effects.

Once in the infusion room, a medical assistant took my vitals.

My infusion room was set up with "bays". Instead of one big room where patients sit amongst each other, each patient had their own space that could be curtained off for privacy. Each bay had one recliner for the patient, an extra chair or two for company, and a TV.

Once in my bay, I got settled in my recliner. I liked having a pillow and one of the heated blankets provided by the hospital. Then, I basically just sat for the next few hours. All the medications that were administered through the port were hung on an IV pole, so I could get up and walk to the bathroom, pushing the IV pole along with me.

Line Up Drivers As You Go / Invite a Friend

My hospital usually provided me with at least 2-3 appointments at a time, so I had time to plan ahead. I was advised to not drive myself to chemo, at least at the beginning. One of my pre-meds was Benadryl, which could make me drowsy, and another was Decadron, a steroid that could make me jittery! Who knows how I would end up reacting to all the meds. 

My husband was able to work out a schedule at work so that he could drive me to most of my first several treatments, but I was also fortunate enough to have a few friends who volunteered to drive me. I decided to take up each friend's offer only once, so as not to burden any one person too much. On average, my treatments lasted about 4 hours, not including driving time, which added another hour at least (round-trip), so it was a pretty big commitment. As it turned out, having friends with me during treatment was one of the best things I did for myself during chemo. Even though I was hooked up to an IV and getting pumped full of toxic drugs, it was downright fun to have a solid chunk of time to just sit and chat with a friend. 

Towards the end of my treatments, I got a pretty good feel for how the drugs affected me, and with my infusion nurse's blessing, I did a trial run of driving home, with someone in the passenger seat just in case. After that, I was able to drive myself to my last few appointments.

What to Bring

Here's a list of what I brought to my infusion treatments:

• Port Pillow for the Car - If needed to cushion the port from the seat belt. My port was placed on my left side, so the seat belt laid right over it if I was driving; I didn't need a port pillow if I sat in the passenger seat, with the seat belt over my right shoulder. My port pillow attached to the seat belt, but it didn't stay in place very well; I had to re-position it every now and then. Still, it worked well if I placed it basically on my shoulder, lifting the seat belt away from my body so it didn't touch the port at all.
  
  
• Water Bottle with Straw Lid - I was advised to drink 2-3 quarts of water a day. I really loved the convenience of the straw lid.
  
  
• Lip Balm - My written take-home instructions after chemo said to use lip balm to keep my lips moisturized. I didn't always use it, but brought it just in case.
  
  
• Hand Sanitizer - It's important to be diligent about preventing illness during chemo. I always ate at some point during my infusion, so having a handy bottle of hand sanitizer made it easy to clean my hands before eating, without having to get up and drag the IV pole into the restroom to wash my hands. 
  
  
• Treatment and Reaction Log - I wrote down the date and time of all medications, plus all side effects I experienced. Each week I kept my infusion nurse informed of my side effects, and how I was managing. She gave me specific advice and suggestions based on how I was doing each week.
  
  
• Things To Do - I always brought my cell phone (my hospital had free Wi-Fi) and a book. Sometimes the Benadryl (one of my pre-medications) would make me feel loopy or tired, so I'd just sit and rest, or nod off. If I had a friend with me, we easily passed the time talking. Sometimes my social worker or my physical therapist (for my double mastectomy recovery; I had cording in one arm) would meet with me during my infusion time. Consider bringing a laptop, an iPad, a knitting project, anything to help pass the time.
  
  
• Snacks and Lunch - My Cancer Center actually provided snacks, drinks, and a lunch for me and a friend. But I would still pack a few snacks just in case.
  
  

Side Effects

My oncologist called my regimen "chemo lite" because I only got one chemo drug, and my dose was apparently very low. There are a whole slew of possible side effects you might experience, from acne to blurry vision to skin rash. I think I got off pretty easy; I had a lot of side effects, but they were mostly just annoying.

The side effects people most worry about seem to be the following:

• Fatigue - After a few weeks, I was able to see a pattern in my weekly cycles. I got my infusions on Friday. That night, I was up late and got very little sleep (sometimes as little as 3 hours), thanks to the steroid pre-med. Saturdays and Sunday mornings I felt pretty normal, and then would start to feel tired come Sunday afternoon. I'd go to bed early, making up for lost sleep. I was always most tired on Mondays, and would continue to drag on Tuesdays. On Wednesdays I would feel increasingly better, on Thursdays I would feel practically normal again, and then the cycle started all over again on Friday. In some ways I preferred to just be a hermit during chemo, but I quickly learned that any activities were best limited to Saturdays, Sunday mornings, and Thursdays; Mondays and Tuesdays were totally out.
  
  
• Nausea - Dr. Susan Love's Breast Book recommends that if you experience nausea, take your prescribed medications as instructed, don't try to "tough out". Just in case, I bought saltines, ginger ale, and a friend gave me some ginger candies in preparation for chemo. I truly lucked out and didn't experience any nausea at all.
  
  
• Hair Loss - Dr. Love's book also says that hair loss is always traumatizing, but the people who do the best are the ones who prepare for it. I'm not sure about that; I tried to prepare, and was still very affected. I was not given a prescription for a wig because my oncology nurse didn't think I would need it; she said I should expect thinning, but not total hair loss. Still, I prepared for the worst and bought a couple headcovers just in case. I felt better just knowing I had a plan, especially since a lot of people say that hair loss happened very dramatically, essentially overnight.
  
  My experience was different; the thinning was gradual. There were a couple days after my 4th treatment when my hair fell out at an alarming rate. The amount of hair that fell out increased every week, and after the 6th treatment, I became self-conscious. After the 7th treatment, it was undeniably noticeable, and I started wearing a hat. After the 10th treatment, I couldn't even stand to look at my straggly hair in private, so I shaved it.
  
  In the months after chemo ended, my hair slowly grew back, but 5 months out I was still wearing hats in public. I was 8 1/2 months post-chemo when I finally felt comfortable going out without a hat.
  
  
• Weight Change - Some chemo patients lose weight because of the nausea. I didn't experience any nausea, but since my chemo regimen included a steroid, I was told to expect weight gain. My medical oncologist advised me to not worry about losing weight while on chemo; it was more important to eat well and maintain good nutrition. I ended up finishing chemo about 5 pounds heavier than when I started.
  
  
• Neuropathy - I had what seemed to be an unusual situation; at least, no one could give me any straight answers. I did not experience any neuropathy while receiving chemo, but about a month after stopping chemo, while still getting Herceptin, I started to get numbness and tingling in my hands. These symptoms came and went, and were sometimes debilitating and painful. My medical oncologist prescribed a "water pill" in case fluid retention was a factor, I started sleeping with wrist braces, and my physical therapist gave me new exercises. It was entirely unclear what was causing the symptoms. Was it delayed neuropathy from chemo? Or the Herceptin? I was also on Lupron and exemestane, so was it related to fluid retention or menopause? Who knows. After about 8 months, the symptoms gradually subsided. Now, about a year after finishing chemo, I still have a very mild tingling in the thumb, pointer, and middle fingers on both hands, but it's like I've gotten used to it, it's just there. Of course, I'm curious to see if it ever goes away!
  
  

Bottom Line

Every person is going to have a unique experience with chemo. Reading about my experience may or may not help someone else, who will probably experience completely different side effects. No matter what your particular experience is, I think the following advice is universal:

• Drink Lots of Water - Just keep a water bottle with you at all times and drink, drink, drink! Yes, you'll need to pee more often.
  
  
• Rest When You Need to Rest - It's okay to lie down in the middle of the day, or go to bed right after dinner.
  
  
• Stay Active - Take a walk to get fresh air, and also to get your blood and lymph circulating. I aimed for 30 minutes a day, 5 days a week, but even 10-15 minutes a day is good. If that feels like too much, my physical therapist recommended doing just a little something any time you get up from resting; swing your arms, or go up and down the stairs a few times.
  
  
• Look Forward - Sometimes chemo can feel like a slog, like it's just dragging on and on. Remember, you are prescribed a regimen, and there is an end in sight!! You can do it! 

6/12/20: Maintenance Herceptin #9 + Lupron

I arrived at 9:15. There was a new pexiglass barrier on the reception desk between me and the person checking me in. She handed me a surgical mask and didn't ask me for my name. Through all the crazy uncertainty of the last few months, my visits to the Cancer Center have been a surprisingly grounding routine.

While waiting for the port nurse, the social worker happened by. She greeted me by name, and I felt bad that I couldn't come up with her name right away. There's actually a thing called "chemo brain", a chemotherapy-related cognitive impairment. I think I have it. I've had trouble coming up with the right word since even before being diagnosed with cancer, so I can't blame chemo for all my mental fogginess.

But there are two things in particular I've noticed over the last several months. First, I am taking a lot longer than usual to read books. I find myself frequently re-reading sentences, so much so that it sometimes feels like I read every sentence twice in order to process it.

Second, I can't follow complex, fast-paced TV shows anymore. We recently watched the series Star Trek: Picard, and I had trouble keeping up, even my kids (in middle school) rolled their eyes at my questions. Then, inspired by Picard, I went back and re-watched episodes of Star Trek: The Next Generation. I specifically remember watching an episode maybe just a couple years ago, and being impatient with how slowly the story unfolded, how every detail was explicitly spelled out, as if the audience couldn't be trusted to make inferences. Watching the show now, I am practically relieved at how clearly events and dialog explain what is going on; the exact thing that used to bother me is now something that helps make the show enjoyable for me.

Anyway, the social worker was on her way to somewhere else, so we only exchanged pleasantries. I think it would have been nice to chat with her for a while, but I guess I don't feel "in need" of talking to her, so it's okay.

For the first time during this pandemic, the port nurse accessed my port (which used to be routine), instead of having the infusion nurse do it (presumably to minimize exposure risks). Even with the orange "Allergy" tab hanging off the "Screened" sticker on the front of my shirt, I had to remind her to use the Betadine instead of chlorhexidine. I think I've gotten more comfortable with speaking up for myself, and less indignant at this kind of oversight. I don't know if it's because I have general confidence in the port nurse, or if it's because I feel a sense of familiarity with her, or if I've just become more understanding that medical providers are human, too, and can make mistakes.

With my port accessed, I didn't have long to wait before being called into the infusion room. Apparently, the forehead thermometer was broken and sent off for repair, so the medical assistant was back to using an oral thermometer.

My infusion nurse came in pretty much as soon as I got settled into my bay. I told her all about the flare-up with my numb and tingly hands, and how doing nothing has gotten them back to baseline.

While getting me started on the Herceptin, she briefly wondered if maybe I should take a break from the hormone therapy, thinking it might be the cause of my hand troubles. I immediately felt uneasy about that option. Stopping my hormone therapy might give the cancer just the chance it needs to start growing again... Also, I pointed out that the first time my hands felt numb and tingly was before I even started exemestane. So maybe the exemestane has exacerbated the issue, but it definitely wasn't the initial cause. Still, that didn't rule out Lupron as the culprit.

I told her how I had found some web sites that link carpal tunnel syndrome with Herceptin. Like my medical oncologist, she didn't seem familiar with the connection, but didn't discount it either. I told her how I've been thinking that maybe if I can just get through my year of Herceptin treatment, then I'll also be almost a year out from chemo (so any residual effects from Taxol should be gone, too), and maybe the problem will just go away! At least I'll have fewer variables by then; after Herceptin is over, I'll only be getting hormone therapy with Lupron and exemestane.

My infusion nurse said the problem with my hands was clearly interfering with my life, and she suggested it might be time to see an orthopedic hand specialist. Maybe they can actually diagnose carpal tunnel syndrome, or rule it out. Again, I felt a little reluctance. That's yet another specialist, another referral, more appointments, maybe more imaging. I don't want to get bogged down chasing this symptom if there's a possibility it might just go away on its own in the fall? But I guess I don't want to risk the symptoms getting worse, either... Anyway, she said she'd touch base with my doctor about making a referral. I think I will be extra vigilant about not over-using my hands and arms, and I'll consider the specialist if my symptoms take a turn for the worse again.

I asked my nurse if she knew when my physical therapist would be accepting patients again. My medical oncologist had said that commonly one of the earliest treatments for something like a pinched nerve is physical therapy, so maybe it would help if I could see my physical therapist again, before turning to a hand specialist? But she didn't know when my physical therapist would be available.

Once my Herceptin was finished, I didn't have any wait at all to get my Lupron shot. I washed my hands and was out of the building by 10:45. Only ninety minutes total! I think that may be a record.

3/20/20: Maintenance Herceptin #5 + Lupron

Everyone at the Cancer Center was wearing a mask, both patients and staff. Checking in, I was given a mask and asked 3 screening questions. I got a large sticker to place on my hoodie to show that I had been screened.

I had a 9:00 appointment to get my port accessed and blood drawn.

Regarding the coronavirus pandemic, my port nurse said that disinfectant wipes and hand sanitizers are being stolen from exam rooms. She didn't say if people were taking them for use in other parts of the hospital, or if individuals are taking them home, but she said she is locking hers up at night, since she needs them for use with her patients.

Upstairs, a sign in front of the infusion room said to check in at the information desk. There was no one at the desk, and since I had already checked in at the main reception desk downstairs, I figured I was all set and went in as usual. Turns out, with the increased security for the coronavirus, they want patients to wait outside until called. Yesterday they had someone standing guard, but no one was there this morning.

Anyway, the medical assistant took my vitals, then got me settled in a bay.

My infusion nurse came in around 9:45. She asked me how my hands were feeling, and I told her I've basically gotten used to the mild puffiness, numbness, and tingling that persists in my fingers. She looked at my hands and said she could see they are just a bit swollen, especially in the fingers. I mentioned that I sometimes feel shooting nerve sensations (no pain) when doing something that requires fine motor skills, like sewing a button.

We waited for the pharmacy to deliver the Herceptin, which got started around 10:15.

About the same time, my physical therapist checked in with me. I had cancelled today's appointment, so I really appreciated that she stopped by. She asked about my hands, and I told her the same things I told my infusion nurse. She asked if my arms felt heavy. (I think this is a symptom of lymphedema.) I said they don't, and the only time my arms really get involved is when I'm bending my elbows, like when I'm holding a phone to my ear, and then my whole hand goes numb, but feels better after I extend my arms again. She said it sounds like the residual swelling just continues to pinch some nerves. She reminded me that it's important to keep up with my exercises and walking. She also said that even if we can't have in-person appointments, she's available for questions, so if anything changes, or if I feel like I need new exercises, I can give her a call.

I got my Lupron shot, and my nurse handed me my visit summary printout. My port nurse had told me that the only blood test ordered was for vitamin D, but the results weren't back yet. My infusion nurse confirmed that I should keep taking the 2000 IU of vitamin D prescribed by my old medical oncologist.

I washed my hands in the restroom just outside the infusion room. I left the Cancer Center around 11:00, so today's visit was a little over 2 hours.

After I got home, I saw I had a voice mail message from my social worker. She was just checking in to see how I'm doing, especially in light of the pandemic, and wanted to make sure I know that I can still call her if I need anything. I appreciated the reminder.

I also checked my blood work online, and my vitamin D is still low, only slightly higher than when it was first checked.

1/17/20: Maintenance Herceptin #2 + Medical Oncologist Appointment + Physical Therapy Appointment #15

Port Access and Blood Draw Appointment

I saw my port nurse at 11:00 to get my port accessed and blood drawn. I told her about the interventional radiologist not wanting to re-open and re-suture the port incision. She nodded her head decisively and said she agreed. I mentioned how I just hope they can get a clean closure when my port comes out, and she suggested I ask about whether or not a plastic surgeon could do it. I don't know how the scheduling works for these port appointments, but I guess it wouldn't hurt to ask, when the time comes.

Medical Oncologist Appointment

After a little wait, a medical assistant took my vitals, and I was taken to an exam room to wait for the medical oncologist who was filling in for my regular oncologist, who was out sick. The substitute doctor was young and friendly.

She asked me generally how I'm doing, so I jumped into two recent concerns I've had. First, a couple weeks ago, I noticed my legs feeling tired and stiff. Literally any and every time I shift my leg position, or stretch them out in any way, I think, "Wow, that feels good, I really needed that." I mean, maybe it's just aging, but it seems a bit much for 43 years old. The doctor said she's about my age, and kind of laughed at the idea of being considered "old". But the only thought she had was that maybe I was feeling some kind of bone or muscle or joint pain from the Lupron.

Also, just within the last few days, when I wake up in the mornings, my hands feel like they've fallen "asleep". That feeling passes after a few minutes, but my fingers feel numb and tingly and "thick" for quite a while longer, sometimes as long as a couple hours. This morning I got so nervous about my wedding ring getting stuck on a swollen finger that I took it off, with difficulty. Once I'm up and moving around, my fingers feel better, but a mild tingliness and "thickness" linger kind of on and off all day. The doctor thought the swelling sounded like fluid retention, again from the Lupron. She also suggested trying a wrist brace, like something used for carpal tunnel syndrome, to see if that helps with the numb and tingly feelings.

(Back at home, a Google search told me that not only is fluid retention a possible side effect of Lupron, but it's also a possible symptom of menopause, which is relevant because Lupron puts me into a chemically-induced menopause. Even more specifically, both swollen fingers and tingling in fingers could be symptoms of menopause.)

While doing my physical exam, the doctor of course noticed the unhealed port incision. I gave her a quick run-down of the history of the incision. To my surprise, she asked if I've considered taking the port out. I told her I had mentioned it to my regular doctor, who didn't think it was a good idea. But this doctor thinks that maybe the port itself, being a foreign object so close to the wound, is what's preventing the incision from healing properly. If I took the port out, I would finish my Herceptin treatments via a regular IV inserted into a vein. She agreed that with 5 lymph nodes removed from my right arm, she would want to be cautious about preventing lymphedema and limit the use of IVs to my left arm. I guess I'll think about it, but my first instinct is to just leave it alone. The port works, after all; it's just an ugly wound.

Finally, the medical oncologist prescribed the exemestane that my regular oncologist and I discussed at my last appointment. She made sure to mention that if the price is outrageous, I shouldn't pay it; I should call the Cancer Center, and they can help figure out a way to get the price down. Apparently, if the prescription has already been picked up and paid for, it's harder for them to manage.

At this point, I figured the appointment was over, but the doctor said she had one more thing to talk about. My regular oncologist is leaving the practice! Ahhhh!!! The substitute doctor said my usual doctor really is out sick (who knows...) but she's also taken another job somewhere else as an in-patient oncologist. Sigh.

She said she could take me on as a patient, and I said that would be fine. From this one appointment, I like her well enough, and I don't know any of the other oncologists at all. Looking back on the appointment, I kind of wish she had led with the possibility of changing doctors because if I had known, I think I would have approached the appointment differently. I definitely would have answered some questions differently. I feel like I was kind of dismissive and not as thorough as I would normally be in some of my answers because I figured, "This substitute doctor doesn't really need to know everything, I'll just give her the gist of it, and catch up my regular oncologist at my next appointment." Oh, well.

At first she said our next appointment would be in 9 weeks. I hesitated a bit; she noticed, and encouraged me to say what was on my mind. I said I've had regular oncology appointments every 2-3 weeks since I started treatment, so having 9 weeks until my next appointment seemed like a long time. Without a thought, she said, "Okay, let's make it 6 weeks." Well, that really made me feel better, that she was so responsive on the spot.

Targeted Therapy Appointment

When I got to the infusion room, the usual medical assistant wasn't at the front desk. I was directed to a bay, and I got myself settled with a warm blanket.

When my infusion nurse came in, the first thing she did was sit down and say that my social worker had told her about my mom. I teared up, and she was very sympathetic. I wasn't really sure how much I wanted to talk about it, so I turned the conversation to how I was sad about losing my medical oncologist. She said she knows the doctor I saw today, and she thinks I'm a good fit with her. She went on to say that she also knows the doctor who is coming in to replace my old oncologist, and she thinks I would be a better fit with the doctor I saw today than with the new doctor. So that was reassuring.

We talked about the future appointments I need to have set up. When she started to confirm that I like my appointments in the middle of the school day, I said, "Well...." and told her about my dad's daily radiation treatments. I said early morning appointments would be better now, so I could get back in time to drive my dad to his appointments. She was immediately sympathetic again, and said she'd do her best to get me appointment times that make my life easier.

I told her about the stiff legs, and the numb and tingly fingers. She didn't have much to say about the legs, but regarding the possibly swollen fingers, she said we should ask my physical therapist to take measurements of both my arms. I guess those baseline measurements she took before will be put to use after all.

My infusion nurse also asked for an update on my port incision. I told her about my interventional radiology appointment, and also about the new medical oncologist's suggestion to remove the port. The infusion nurse took a look at my left arm - confirmed that the whole arm did look puffy - and said it "wouldn't be a breeze" to use my veins directly, but it was doable. She said it's not something that needs to be decided right away; I can think about it for a while, and re-visit the idea later as the weather gets warmer (at which time I may want to wear cooler tops that would expose the incision site).

My physical therapist came in at 12:45, just before I got started on the Herceptin.

Physical Therapy Appointment

My infusion nurse and I got my physical therapist caught up on my numb and tingly fingers. She took measurements on both arms; from my wrist to my shoulder, every 4 cm, she measured the circumference, for a total of 11 measurements on each side. She had a printout of my previous measurements, and wrote down each new measurement alongside the old one; every single measurement was bigger this time.

So we knew for sure that both arms were a bit swollen, but she also wanted to see if one arm was bigger than the other, which would be a sign of lymphedema. She went back to her office to put the numbers into her computer, and she came back to report that my right arm is now 7% bigger than my left arm. That's still within the normal range, not quite the 10% that would indicate possible lymphedema. She said she even called up a colleague who is a lymphedema expert, and they agreed that given my description of the problem, it doesn't sound like lymphedema. Most notably, lymphedema tends to get worse during the day, whereas my swelling starts first thing in the morning, and gets better during the day. She said we'd keep an eye on the swelling, and she'd continue to do measurements.

(Later at home, I realized I never asked anyone what I should do about the fluid retention. Google tells me I should drink more water, eat less salt, and keep active.)

The physical therapist also worked on my cording. During this time, she told me how she has a blood condition, and my new medical oncologist is her hematologist. (Hematology/oncology is one combined specialty.) She talked about how much she likes this doctor, and it was definitely reassuring to know that this doctor is someone her colleagues would trust to manage their own care.

The Herceptin infusion finished first, and the infusion nurse let us stay in the bay until we were done. I left at 1:30, making my visit 2 1/2 hours.

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.

12/16/19: 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.

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.

12/6/19: 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. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

11/15/19: 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.

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

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

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

Port Access

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

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

Medical Oncologist Appointment

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

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

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

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

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

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

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

Social Worker Visit

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

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

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

Chemotherapy + Targeted Therapy

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

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

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

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

Physical Therapy Appointment #4

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

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

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

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

Flu Shot

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

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

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

Blood Work

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

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