6/10/22: Last Lupron + Medical Oncology NP Appointment + Phone Calls

I got my blood drawn. 

A super friendly new-to-me medical assistant took my vitals, then brought me to an exam room for my EKG. I changed into a gown (top only), and the medical assistant put a bunch of electrodes on my arms, ankles, and torso. I had almost forgotten that getting an EKG means more time spent attaching and detaching the electrodes and changing my clothes than actually getting recorded. 

Next I saw my medical oncology NP. Usually I have a long list of concerns, but today it just felt like we were touching base on a few known issues. No change in my side effects (slight neuropathy in first 3 fingers on both hands, tightness in joints), and they aren't so bad that they disrupt my activities of daily living. Actually, I've noticed I haven't had as many hot flashes lately, but I forgot to mention that.

My NP was very sympathetic about my upcoming surgery, but I assured her that I understand and accept the rationale, and I'm okay with it. It actually felt a little comforting to know that she was treating the surgery like a Big Deal, because I do think both my usual GYN and the GYN surgeon gave the impression that the surgery is No Big Deal. In a way, that's a good thing, because it implies that to them, the surgery is commonplace and nothing to worry about. Still, surgery is surgery, and I'm getting organs removed from my body!

My NP reiterated what my GYN surgeon has already said, which is that after the surgery, I should not expect to experience many new symptoms of menopause since my body has already gone through the effects of losing estrogen. 

During this appointment, some of my blood work results came in, and my NP was super excited to show me that my ALT and AST (the liver function tests) went down again! Not only that, but the AST actually fell to within normal limits!! Yay!! I've been making a real effort to exercise more, drink more water, drink less alcohol, eat better, and stay active after eating, but given the steady rate of decline of the LFTs, I'm guessing none of that really matters as much as the simple fact that I stopped taking Tamoxifen. But it's not all for nothing, because my NP commented that I look like I lost weight! I did lose something like 3-5 pounds, not enough to really be noticeable, but it's something. 

At the end of the appointment I asked if I was "all set" with that "medical clearance" the hospital wanted, but my NP didn't seem to know what that was all about. She wondered aloud if I should get a chest X-ray, and then decided it wasn't necessary at my age. I left feeling a bit uneasy about whether or not I was "all set" for surgery next week. 

I almost forgot that I still had to get my Lupron shot after this appointment. In a way it felt a little bittersweet seeing my treatment nurse for probably the last time. I mentioned that next week's surgery would make this my last injection appointment, and the nurse expressed encouragement and wished me luck. I was feeling a bit emotional about never seeing this nurse again, but I also felt silly because the nurse was pretty matter-of-fact about it, so I just kept the sentimentality to myself and cheerfully told her I've enjoyed talking with her at my appointments. 

On my way out, I scheduled my next appointment with my oncologist. It was supposed to be in 3 months but the earliest available was in 5 months. 

Back at home, I was still feeling unsettled regarding that "medical clearance", so I made some phone calls. First I called the hospital's Pre-Admissions Testing. They said if I need medical clearance, it's something I get from my PCP. I explained that the pre-operative phone call person said it could go through my oncologist, who I was already scheduled to see, but when I asked my oncology NP today, they didn't seem to know what it was all about. So then they said I should call the office of the doctor performing the surgery to find out if I'm "all set" or not. So I called the GYN surgeon's office, and the surgery coordinator did not know what kind of "medical clearance" was needed either! She said she didn't know if I was "all set" or not, but she'd put in a message with the doctor and get back to me next week. I expressed concern that this all might not get resolved in time for my surgery, and the surgery coordinator said, "We'll get to the bottom of this. Don't worry." So okay. I guess I won't worry! (Of course I will, but I will tell myself not to.)

Oh, one last thing. My blood work came back showing my estradiol as <5, which is where it should be. My NP said maybe they'd check it one more time after surgery, just for fun, but once the ovaries are out, the whole point is that we won't have to worry about the estradiol anymore. 

5/13/22: Lupron + Blood Draw and Results

After more than 2 years of monthly Lupron appointments, if the BSO surgery goes according to schedule, today will be my second-to-last Lupron injection. 

During check-in, the receptionist who is always extra friendly to me (not the original receptionist who always recognized me, who's long gone by now) was training a new person, and I waved to another familiar receptionist. The new hire remarked that I appeared to be well-known in the hospital, and I explained that I've been coming in at least once a month for almost 3 years! Ironically, I then told them about my upcoming surgery, which will put a stop to my monthly visits. The extra friendly receptionist was happy for me, that I might finally reach a point of stability in my treatment, with no more new interventions.

I got my blood drawn, and then went upstairs for the Lupron shot. The nurse who gives me the shot is not always the same, but most times it's the one who was trained by my old infusion nurse. I like her because her shots are the least painful - sometimes even pain-free - and she's always easy to talk to. She saw in my medical records that I have a surgery coming up, and I told her how the surgery means I won't be coming in for shots anymore, after the next time. She, too, expressed support and wished me luck. 

It's funny, you do something long enough, and you feel a sense of loss, even if that thing wasn't exactly something you enjoyed. I know I will appreciate not having to schedule my life around monthly appointments, but at the same time, it's a big change to my routine. In a good way, of course, but still a change, and I will miss the kindness and support of all the people I've been seeing regularly.

The good news is that my LFTs have continued to go down. Yay! They are now the lowest they've been while still being "high". (My first "high" results came in December 2021.) I don't know if lower LFTs automatically means the steatosis is also improving, but I certainly hope so. I will ask my hepatologist when I see him in August.

Meanwhile, my estradiol is back down to <5, which is where it should be. I guess it doesn't matter, though, since we know that it fluctuates and can get "too high". So it just happens to be low this month, but I don't think that will change my BSO plans. 

2/18/22: Lupron + Blood Draw + I Picked Up a Prescription

I forgot that being hydrated helps with blood draws, and I didn't drink any extra water this morning. The phlebotomist had trouble drawing blood, she had to poke around quite a bit! I need to make a point to hydrate for future Lupron appointments, since I think they'll be drawing blood for the next few months.

On the way to getting my Lupron shot, I noticed blood dripping from my arm! It wasn't a lot, just a little leak, but the medical assistant who took my vitals got me a new bandaid. Even now, the spot where the needle went in is still a little sore. 

I didn't have to wait for my nurse to come in, the one who is best at giving injections. We chatted about being anxious for our kids now that school mask mandates will be lifted in a couple weeks. We agreed that it's still too early for masks to come off in schools, what with community transmission rates still being high. It was just comforting and validating to know that a healthcare worker parent feels the same way I do.

After my appointment, I went to CVS to pick up my anastrozole prescription. The person doing check-out said the pharmacist needed to ask me a question, so I had to wait a few minutes for the pharmacist to be available. She just wanted to make sure that I will have stopped the Tamoxifen before starting anastrozole, and I confirmed that I've already stopped. This seems like a clear benefit of having all my prescriptions in one place, and I appreciate that the pharmacy did their due diligence!

4/16/21: Lupron

I used to feel a sense of purpose going into the Cancer Center, like fighting cancer was my job. Now I feel sort of sad, like the persistent threat of recurrence is a burden I can't get away from. 

I expected to have my blood drawn today, to check my hormone numbers, but they didn't mention an order, and I didn't ask. I guess there's nothing urgent about it, I can ask at my next oncologist appointment.

The medical assistant who took my vitals was yet another person who was new to me, but the nurse who gave me my shot was my former chemo nurse. It's been months since I last saw her, and it felt a little weird, like we used to be so familiar and now we're not so much. I mean, it's not like we were friends, but certainly I used to talk to her about a lot of emotional things, and today it was just regular chitchat. 

Regarding my covid vaccine, my arm feels mostly better now, it's just a tiny bit sore if I touch the injection site. 

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! 

9/4/20: Maintenance Herceptin #13 + Lupron

After today, only 1 more Herceptin to go!!!!

It was a pretty routine visit. The port nurse accessed my port, the medical assistant took my vitals, I got my Herceptin, and then the Lupron. 

My usual nurse wasn't there, but the nurse I saw was one I've had before. I told her how the hospital had called to schedule my port removal, but I wanted to have the procedure done at the main hospital in the city, and no one has called to schedule that yet. She said she'd email the nurse coordinator about it. (Back at home after the appointment, the nurse coordinator called to say she put in the request, and I should expect a call within a week.)

After the Herceptin, another nurse I've had before finished the appointment with me. She de-accessed my port and gave me the Lupron shot. I like both nurses, but I was happy with the switcheroo because the second nurse always does an especially good job with the shot. It's virtually painless! She says it's because she takes care to do the injection slowly. 

8/14/20: Maintenance Herceptin #12

Today when the medical assistant took my blood pressure, the diastolic number was a very high 106. She took it again, and it was down to a very normal 77. 

In recent visits this has been a relatively common occurrence: my first blood pressure measurement is high, so they take it again, and the second time it's normal. Not sure what that means. Do I come into appointments feeling anxious, and need to consciously calm down? I don't think I feel any more anxious about my appointments now than before. Anyway, my infusion nurse pointed out that my cardio-oncologist thought my blood pressure was fine, so I guess it's nothing to worry about.

She also mentioned that she'd ask my oncologist about scheduling me for port removal. After today, I have only 2 infusions left!! She said they might even schedule me in before my last treatment, which is fine because the Herceptin infusion can always be done via an IV in the arm. 

I'm looking forward to getting the port out. I'm so tired at looking at the ugly scar, I really hope they can clean it up when the port comes out... Given how the other procedures went, though, I guess I'll cross my fingers, but I won't hold my breath. The tiny non-dissolvable stitch is still there, too; it doesn't hurt or anything, but it just bothers me that it's there, and I'll be glad when it's out. 

8/7/20: Lupron

I overslept this morning! I had a 10:00 appointment, which means I'd normally leave the house at 9:15; the drive is a solid 30 minutes, and I like to leave a little extra time in case of traffic, plus I like being early. 

Well, I woke up at 9:25. I sat up in a panic thinking, "What day is it?! Where am I supposed to be?!" It took me a few moments before I realized I had 5 minutes to get ready and be out the door. I rushed around and left the house a little after 9:30. I literally walked through the hospital doors at 10:00 exactly. 

I wasn't late, and I'm sure this story doesn't seem like a big deal to most people. But I am just the type of person who likes to arrive early to everything, and being late stresses me out. Especially now that I'm hyper-conscious of my blood pressure, I'd just like to avoid unnecessary anxiety!

Anyway, today's appointment was just for Lupron, so it was a quick 15-minute visit. 

My infusion nurse asked how my cardiology appointment went. I said I was given the green light to continue with Herceptin. I also mentioned how the appointment made me aware of how every part of my health, including my cholesterol and blood pressure, might have a connection to my cancer treatment. There wasn't much for her to say, though she gave me a few words of support, reminding me that no matter how "normal" going to the Cancer Center may seem to me now, it's still a stressful thing to have to do, on top of the pandemic, so basically I shouldn't be too hard on myself, that these developments are understandable in my situation. 

7/24/20: Maintenance Herceptin #11 + Medical Oncology NP Appointment

After the port nurse accessed my port, and before I went upstairs for my infusion, I met with a medical oncology NP. My oncology appointments now alternate between the doctor and the NP, and this was my first time meeting the NP. She was great, like everyone else I've met at the Cancer Center.

We went through the whole history of the numbness and tingling in my hands. The symptoms have been at baseline since the beginning of June, and since they're not disrupting my daily activities anymore, there's no sense of urgency to get an MRI. The NP decided to wait, and to have me see the physical therapist in person first. If the physical therapist still thinks I need an MRI, maybe they'll order it then. I don't have a strong feeling one way or the other about it at this point. 

As instructed by my PCP, I asked if I should get a colonoscopy before age 50. The NP seemed surprised by the question, and said no, they do not usually recommend early colonoscopy for breast cancer patients. 

I also asked her opinion about getting my ovaries out. Based on the genetic counselor's advice, I should feel fine about not getting them out. I guess I'm just curious to know if anyone has any thoughts or information that I haven't considered. Anyway, she said she understands how complicated the question is, but she isn't very knowledgable about this particular issue, and would defer to the medical oncologist.

After the NP appointment, I went upstairs for my Herceptin treatment. When the infusion was finished, and the infusion nurse took off the dressing on the port to de-access it, I asked her to take a closer look at my port incision; lately I've noticed two little dots, and a tiny black shadow between them, on the incision scar. I think it's a tiny stitch! Not the dissolvable kind, either; it looks like the regular kind that was used for my re-stitch. The infusion nurse agreed, and said maybe it's working its way out. She put some antibiotic ointment on it, and a bandaid. I guess we'll see if it comes out. I figure, they can always take it out when I get my port out. I just don't want it to get infected or anything in the meantime.  

Today's appointment took about 3 hours total. Back at home, I checked my blood work online, and my vitamin D levels are back to normal! I'm taking a daily supplement of 2000 IU, and it's good to know for sure that it's working. 

7/10/20: Lupron

Driving to and from today's appointment, I was discouraged to see the low rate of mask wearing in front of stores, on the sidewalks, and in the parks. (My state has an order to wear masks in indoor and outdoor public spaces where social distancing is not possible.) Compared to a couple months ago, there were more people out and about, and fewer people wearing masks. Everyone thinks we're okay because our numbers are flat, but with people not taking precautions, I'm nervous about a resurgence.

For some reason, the Cancer Center was extra busy today. The parking lot was unusually full, and there was a line to check in.

My nurse today was one I've had before, but not often. She called me in from the waiting area, instead of the medical assistant, and took my vitals. Maybe having me see only one person was an effort to minimize patient interactions among the staff.

I was pleasantly surprised that even though she's not my usual infusion nurse, she seemed up-to-date on my hand symptoms. She knew about my physical therapist appointment yesterday, and confirmed that I should expect an MRI to be sheduled soon.

She also mentioned that she is a breast cancer survivor, too, and that she has the exact same symptoms - numbness and tingling in the tips of her thumb, pointer, and middle fingers!! She attributed her symptoms to Taxol, which she finished about 2 years ago. She said her symptoms have gotten better over time, but they're still there. I asked her if she ever had Herceptin (she didn't), but I didn't ask if she had surgery or hormone therapy. She didn't at all imply that my problem might be the same, but it's always reassuring to hear that I'm not alone with these symptoms.

The whole visit was a very efficient 15 minutes.

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.

5/20/20: Maintenance Herceptin #8 + Medical Oncologist Appointment

Yesterday, the Cancer Center called to pre-screen me for today's appointment. Over the last few months, the number of COVID-19 screening questions has grown, and the questions have evolved. At first, they asked only if I'd travelled to China in the last 2 weeks, then they asked if I'd travelled internationally, and now they ask if I've left the state. They used to ask if I'd had a fever or respiratory symptoms, and now they also ask about other possible symptoms, like if I've lost my sense of taste or smell. And in terms of exposure, not only do they want to know if I've been in contact with anyone who has been diagnosed with or tested for COVID-19, they also want to know if I've been in contact with anyone who just shows symptoms of COVID-19.

I had an 8:45 appointment to get my port accessed and blood drawn, but around 9:00, the port nurse came out and said she had to check with my doctor because she didn't see any lab orders for me. Meanwhile, a medical assistant took my vitals.

It turned out that my oncologist did not require any blood work today, which threw me off a little because I was hoping to see if my vitamin D levels have improved. (The last time I checked, they were slightly better, but still below normal range.)

In the exam room, the medical assistant let me know that the doctor was running late. I had a book to read, so I didn't mind the wait.

The doctor came in around 9:45. We started out talking about how I've been feeling emotionally, and it occurred to me to say, "I bet you hear this kind of stuff from your patients all day long, just the same type of complaints from different people." She told a story of something that happened to another patient, along the same lines of what I had been saying, and it really helped in that "you are not alone" type of way. She said some supportive things, and it really felt strengthening.

I asked if my vitamin D deficiency was something I should be worried about. My vitamin D number is in the mid-20s, but normal range is 30-60. She said if my number was in the teens, then that would be concerning, and she might temporarily prescribe a weekly uber-dose of vitamin D to get the number back in the normal range. But with a number in the 20s, my 2000 IU supplement should be enough, plus we're coming up on summer, and the added sun exposure should help, too. She said she'd check my levels next time.

I also asked about my most recent echocardiogram. I checked my results online, and the primary number of interest, the ejection fraction, wasn't listed exactly. My first report had an ejection fraction of 63%, and the second report said 61%. This third report said only >=55%, with a note saying it was "visually estimated". The ejection fraction is affected by Herceptin, and some people have to discontinue treatment if the number gets too low. My doctor didn't know why this report didn't have an exact number, and she said she'd look into it. She pointed out that the range might not be informative enough; if my ejection fraction was actually as low as 55%, even though that's in the acceptable range, the precipitous drop would be concerning.

Then, I gave a full report on what's going on with my hands. She said the fact that symptoms get worse when I'm lying down makes her think it could be a pinched nerve in my spine. Apparently, sometimes one of the first things to try for a pinched nerve is physical therapy, so it's too bad I'm not able to see my physical therapist because of the coronavirus. She asked if doing yoga was within the realm of possibility. I said I used to do it a long time ago, so it's possible... She suggested doing yoga 3 or 4 times a week between now and my next appointment, and if there's no improvement, she might want to order an MRI.

There are medications that can be used to address numbness and tingling, but I said I am not too keen on taking medication for a side effect of another medication. I'd rather try to manage the symptoms in other ways.

I asked if she thought my symptoms might be related to Herceptin. She didn't seem familiar with a link between Herceptin and carpal tunnel syndrome, but she also said she "never says never", because the range of reactions to medication is so broad; it's not impossible. She said there's a stronger connection between Taxol and neuropathy, and it's possible for neuropathy to start even after finishing Taxol. In fact, she said that she usually advises patients to allow a full year for the effects of Taxol to subside. Either way, if I can just push through until next fall, maybe things will get better after I'm done with Herceptin, and with chemo farther behind me.

I also described the stiffness I've been feeling in my legs. Recently I've noticed that in the time it takes me to cook dinner, my legs feel so tight that when I sit down, it's a huge relief. But then, if I sit for even just a few minutes, standing up takes effort, and I feel a lot of discomfort in my legs for the first few seconds, until I'm able to walk it off. My doctor seemed confident that these symptoms are a side effect of the exemestane. I remember I first reported this symptom before I even started exemestane, and at the time she said it could be the Lupron. If it's hormone-related, maybe it's both. It's definitely gotten worse, so maybe the exemestane exacerbated it. In any case, she recommended doing leg stretches, which could also be accomplished with the yoga. Also, if the stiffness gets to be too much, I could try taking ibuprofen to relieve it.

Up in the infusion room, around 10:15, I got settled in a bay, and was immediately annoyed with myself because, despite having written down all my questions, I forgot to mention one of the symptoms that I thought was important. I felt like maybe it wasn't worth mentioning now, but my infusion nurse said if it was important to me, then I should say it. I appreciated that reassurance so much. I told her about the couple incidents when I woke up feeling like my fingers were being squeezed to the point of my circulation being cut off. She said she'd put it in her notes so my doctor would be aware of it. Also, she suggested wearing the wrist braces every night.

We discussed upcoming appointments, and she said my next oncology appointment would probably be with my doctor's NP, and after that, my appointments would alternate between the doctor and the NP. She must have sensed I was caught off guard by this news, because she then listed a series of positive things, like she was trying to allay my concerns. She said she thinks I will really like this NP, that it will be easier to get appointments (I won't have to move my infusion appointments from Fridays to Wednesdays, like I did today, in order to accomodate the doctor's schedule), that it's always good to have another point person for communications with the Cancer Center, and I can always request to see my doctor, if I want. I am actually pretty comfortable with the idea of seeing an NP, but I was feeling like I was just getting comfortable with my new oncologist, and now I'll have to get used to yet another provider. It felt like another "baby bird" moment. It's all fine. Just another step in the process.

I started the Herceptin just after 11:00. The infusion took the usual 30 minutes, then the infusion nurse de-accessed my port, I washed my hands in the restroom, and I was out by 11:45. So, 3 hours total, not including driving time.

5/15/20: Lupron

Another quick and easy appointment. In and out in 15 minutes.

Again, I called my infusion nurse from my car as soon as I arrived, so they could get a head start on ordering the Lupron from the pharmacy.

The only noteworthy thing from today's visit is that the medical assistant had a new thermometer. They used to take my temperature at every appointment with a thermometer with a disposable tip that goes under the tongue. With the mask requirement because of the coronavirus, I had to pull down my mask to get my temperature taken. Now they are using a new thermometer that gets swiped across my forehead, so the mask can stay put.

5/1/20: Maintenance Herceptin #7

My Cancer Center is 30 minutes away, and usually I give myself extra time, just in case. These days, with my state's stay-at-home advisory, there's no traffic to worry about. I still arrived a bit early, but I decided to stay in my car until just before my appointment time of 9:30, to minimize my time in the building. Standing outside the automatic doors, I could see someone at the reception desk already, so I waited until he was finished before going in.

I got a surgical mask, checked in, and was directed to go straight upstairs, again bypassing my usual appointment with the port nurse. I think this time it was to minimize person-to-person interactions. I sat in the waiting area for a few minutes before being called in.

As usual, the medical assistant took my vitals. I was happy to see my weight holding steady. I have to say, watching my weight go up has been one more unhappy part of this cancer journey. I'm much more conscious of what I eat, and I'm exercising more than before, but I guess medications and hormones matter more. Either because of the hormone therapy itself, or because of the menopause resulting from hormone therapy, not only have I gained weight, but the fat has unflatteringly been redistributed around my belly, which of course is only exaggerated by my flat chest. Bah. I never really thought of myself as vain before, but I guess I was just comfortable in my old body; now that I'm not so comfortable with my hair and chest and belly, I'm way more self-conscious than before.

Anyway, my "new" nurse came in as soon as I got settled in my bay. I appreciated a lot that she spent quite a bit of time talking with me about how I'm feeling, both emotionally and in regards to my numb and tingly and puffy hands.

She accessed my port and, interestingly, she put on a gown for the process. This was new. She said it's just one of the many new protocols that are in place because of the coronavirus.

I started Herceptin around 10:30, and finished a little after 11:00. I used the bathroom to wash my hands just before leaving the building. Today's visit was pretty efficient, less than 2 hours.

4/17/20: Lupron

For today's appointment, I was in and out in 15 minutes.

As instructed last week, I called my infusion nurse from my car in the parking garage. I left a message saying I had arrived. She called back within a few minutes to let me know that she put in the pharmacy order for the Lupron, so it should be ready by the time I checked in and got to the infusion room. I guess the purpose of me calling was to reduce the time I needed to be in the Cancer Center.

When I saw that there was a person checking in ahead of me, I decided to put on my cloth mask while waiting in line. During the check-in, I was given a surgical mask to wear instead. My identification and allergy wristbands were again trimmed and attached to the back of a sticker, which I stuck to the front of my shirt, identifying me as having been screeened.

Up in the infusion room, the medical assistant took my vitals, then directed me to a bay. Almost immediately the "new" nurse who has been working with my regular infusion nurse came in. She gave me the shot, and I dare say it was the most gentle and painless injection I've had so far!

4/10/20: Maintenance Herceptin #6 + Social Worker Phone Call

Yesterday I received a phone call confirming my appointments today. They pre-screened me with the usual 3 questions, but also said I would be asked the same questions again when checking in. I asked if I should arrive wearing my own cloth mask (wondering if this might help the Cancer Center preserve PPE); she said I can if I want, but I would still be given a surgical mask to wear when I arrive.

I figured there's no need for a cloth mask just for the drive in, so I checked in without a mask and immediately put on the surgical mask they gave me.

The person checking me in recognized me and didn't ask for my name. She said my appointment with the port nurse, who accesses my port, was cancelled. I wondered if maybe the appointment was cancelled in an effort to minimize person-to-person interactions, since the infusion nurse can access my port, too.

Usually I am given a wristband with my name, birth date, and medical record number, and also a second wristband to show that I have an allergy (to chlorhexidine). Today, instead of putting the wristbands on my wrist, the wristbands were trimmed (to cut the straps off) and attached to hang off the sticker that identifies me as having been screened. They were visible on the front of my shirt, presumably to eliminate unnecessary touching.

I went directly to the second floor, but instead of going straight into the infusion room, I waited outside in the waiting area until I was called.

Around 9:30, the medical assistant called me in. I know the staff is under more stress these days, so I brought them a big bag of Lindt truffles. (I did the same at my last visit, too.)

She took my vitals and brought me to a bay. I see the same medical assistant at almost every visit, and I appreciate how she always helps me settle in with a pillow and a warmed blanket. With the check-in person knowing my name, and the medical assistant giving attention to my preferences, coming to the Cancer Center actually makes me feel seen and cared for.

My infusion nurse came in around 9:45. We chatted first about the struggles of adapting to this crazy new life, both at work for her and also at home, juggling at-home child care and online schooling.

She asked about the tingling in my hands. I told her how having mild numbness and tingling in my fingers is like my new baseline. I noticed this week that if I'm not diligent about staying active (stretching, walking, and doing nerve glides), the numbness and tingling (and tightness and puffiness) can still get worse, but not as bad as before. Currently, even when it's "bad", I don't feel any weakness or pain, so that's still an improvement.

About 10:00, my infusion nurse asked if it would be okay to allow a new nurse to access my port. I met this new nurse last time; she's new to the Cancer Center but is an experienced nurse coming from an inpatient position. She needed to be "checked off" for doing a port access. So that's why my port nurse appointment was cancelled! It was fine with me, and also kind of interesting to hear them talk through the process.

My infusion nurse also wanted to talk about my Lupron injections. Looking for ways to reduce patient visits, she asked me if I would be comfortable giving myself the monthly shots at home! She made it clear I can say no, that it's just part of her job to ask. She said she's not even sure if my insurance would allow it; asking the patient whether or not to pursue this option was just the first step. She said a pharmacy would deliver the medication to my home, and she would train me today on how to do it. The injection is usually given in my butt, but if I did it myself, I would use my thigh. She said, too, that Ken could be the one to give the shot, if that was a possibility.

My initial reaction was to say no, but I felt I should give it a fair thought before responding. I asked what could possibly go wrong? She said if I make a mistake, it's possible the medication might not get fully injected, which means it wouldn't be as effective. Or, if I don't clean the injection site properly, it could get infected. I definitely don't want to do anything that might increase my chances of needing even more medical intervention. And I didn't say this at the time, but in retrospect, I also don't want to take on anything that would add to my anxiety, and I think trying to self-inject my Lupron would produce more anxiety than going out for an in-person visit.

I asked if I could get the 3-month dose of Lupron, which I've read about. She basically said I wasn't prescribed the 3-month dose, which tends to lose efficacy towards the end of the 3 months. I don't know under what circumstances the 3-month dose is acceptable (maybe it's more commonly used for other purposes other than breast cancer), but in my Facebook support groups, monthly doses do seem to be the norm.

My infusion nurse has always been very observant, and she said that since I showed hesitation, I shouldn't do it at home. I was relieved, and she was completely understanding, adding that giving herself an injection wouldn't be easy even for her. The other nurse who accessed my port agreed. I don't know if they meant it, but I appreciated the reassurance. Anyway, they are still trying to reduce person-to-person interactions, so she instructed me to call her from my car when I arrive next week; she said she could check me in herself, bypassing the reception desk.

I started the Herceptin at 10:45.

Around 11:00, my social worker called my cell phone. She said she is not visiting patients in person (to maintain social distancing), but wanted to check in to see how I'm doing during this whole pandemic. It was hard to know where to start. I said I feel lucky in a lot of ways, compared to what I know others are going through. Everyone in my household is able to stay home and isolate. My kids are old enough to be self-sufficient with their school work, but not too old that they are rebellious and giving us a hard time about not seeing friends. In light of all the lonely deaths due to coronavirus, I feel especially fortunate that my family was at my mom's side when she died, and that our friends and relatives were able to gather for her funeral; we had all the traditional means of comfort and mourning that are now being denied to victims of covid-19 and their families. Also, I'm grateful that my dad's radiation just happened to end when the stay-at-home advisory started, a very lucky coincidence.

She said, "I hear that you are putting events into perspective, which is good, but that doesn't negate the fact that you are still in cancer treatment, and mourning the loss of your mother. Even though the world is going through a pandemic, you are also experiencing a personal crisis, and I give you permission to feel all the things you are entitled to feel." Those weren't her exact words, but pretty close. I teared up. I don't want to be all "woe is me", but I do still feel like I have a lot going on. As if a pandemic isn't overwhelming enough, I'm worried about my dad being alone, I am anxious about the dual risk of coronavirus and cancer, and I'm still trying to adjust to my new body, including my flat chest (still numb in some places, swollen in others, and also a challenge now that layers aren't as easy to pull off in warm weather), my hair (that is growing back but looks awful so I'm still wearing hats), and the medication side effects that just make me feel old and not well (tingling in my fingers, tightness in my legs and hips any time I stand up, and overall tiredness).

My social worker also pointed out that because the pandemic is rightfully at the forefront of everyone's minds, I'm likely not getting the kind of support that I might otherwise get from others, so it's all the more important that I work through my thoughts and feelings, and preferably not by myself. She says talking things through really does help to lighten the burden a person feels because it changes the way our brain processes the events. And I have to say, hanging up the phone after our conversation, I did feel a huge sense of relief. I'm so glad she called today, just talking to her for that short amount of time made me feel so much better!! She reminded me again of the breast cancer support group, which is now meeting virtually. I'm such an introvert, I've never been a fan of group settings, but I'll think about checking it out.

I got off the phone with my social worker just before my Herceptin finished at 11:15. The new nurse de-accessed port, and I left by 11:30. Altogether, today's visit was about 2 hours.

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.

2/28/20: Maintenance Herceptin #4

After getting my port accessed and blood drawn, I headed up to the infusion room.

When the medical assistant took my weight, it was the highest since I started treatment. I'm almost 10 pounds more than my pre-chemo weight. This is pretty depressing. It's not exactly unexpected, since weight gain is a side effect on Lupron and a symptom of menopause. My old medical oncologist had advised me to not worry about losing weight while on chemo, so I really hadn't been thinking about it. But I'm not happy with the weight gain, so maybe it's time to pay attention.

I was in a bay by 9:30, but waited until almost 10:00 for my infusion nurse. I told her all about the recent developments with the symptoms in my hands. She said she could tell that my left hand is still a bit swollen, which probably explains why my left hand feels worse than my right. She said fluid retention could very well be a side effect from the Lupron. I guess that means I might not be able to get rid of it, though sometimes medication side effects subside after a while, so who knows.

She also said the symptoms might be a delayed reaction from chemo, as my physical therapist suggested last week. She said she wouldn't rule it out, especially since she's seen some unexpected reactions to chemo from Asian patients specifically. I remembered that my old medical oncologist had said the same early on, that clinical studies generally enroll mostly white patients, and Asian patients tend to react differently. My nurse said that in her experience, Asians are more sensitive to the drugs, and their side effects can be unpredictable compared to what might be expected.

Brainstorming ideas, she brought up compression sleeves and kinesio taping, which my physical therapist has also mentioned. I figured it's good to know these options exist, but since I just started with the wrist braces and radial nerve glides, I don't need to try anything new just yet.

Even after talking for a while, I still had to wait for the pharmacy to send up the Herceptin. My infusion started around 10:30.

I left the Cancer Center just after 11:00, which means today's visit took about 2 hours. I'd been wondering if my infusion appointments might be more efficient now that I'm only getting one drug, but I guess there's still a lot of waiting around time.

2/7/20: Maintenance Herceptin #3 + Physical Therapy Appointment #18

Today I arrived just in time for my 10:30 appointment. The medical assistant took my vitals, then helped me get settled into a bay.

My infusion nurse came in shortly after and asked about my legs and hands. I told her my legs were the lesser issue of the two; they still feel tired and stiff, maybe even more so since starting the exemestane, but mostly they just make me feel like an old person. I'm doing additional leg stretches every day, but still, any time I get up to stand, it feels like I've been in one position for hours, even if it's only been a few minutes. 

Then I told her all about my hands, my observations and how I've been managing the symptoms. She said it sounded like the symptoms were "taking over my life", by which she meant, the symptoms aren't getting worse, they may even be getting better, but only because I'm following all these rules all day (e.g., sleeping in specific positions, doing my morning routine, limiting my arm and hand use to ward off the tingling). She said it sounded exhausting, and not sustainable, and we need to try to figure out how to address the root problem.

Around this time, my nurse stepped out to take a call from my medical oncologist. Not the new one, but my original one, who is still working at the Cancer Center through February. When she came back, she said my doctor wants to see me for an appointment, to try to get a handle on what's going on with my hands. I scheduled it for next week.

My medical oncologist also suggested a one-time dose of Lasix (general name furosemide), a pill that would make me pee a lot, to help eliminate excess fluid. The idea is, if my symptoms are from nerves being crowded because of swelling, let's see if reducing the swelling can improve the symptoms. It might also help me to figure out if the discomfort I feel when making fists, and a new pain I sometimes have in the joints of my thumbs, are from swelling or joint pain (a side effect of exemestane). I took the pill this afternoon, so we'll see how things feel tomorrow morning.

My nurse accessed my port around 11:00. She said she would draw blood to see if anything in my blood work could help explain the swelling, or at least rule things out.

I told her that I've been thinking about getting my port out after all. We're thinking of taking a trip later this summer, between my treatments, and I'm uneasy about travelling too far from my Cancer Center with a sort of open wound that is at risk of infection. She agreed that it would make sense to get the port out, maybe in April, giving me a couple months to heal before the summer. She counted out the number of remaining treatments for which I would need to get an IV in my arm, and she even put a tourniquet on my left arm to count the accessible veins. She said it would be "totally doable". (The IV would be limited to just my left arm, where I had 1 lymph node removed, to minimize the risk of lymphedema on my right side, where I had 5 lymph nodes removed.)

I started the Herceptin at 11:30, and finished around 12:00.

I went in for my physical therapy appointment around 12:30. She re-measured my arms and found that they are less swollen than they were last time, but still swollen compared to my original measurements.

She had some ideas for helping to alleviate the swelling in my hands, like kinesio taping and compression sleeves (even if I don't technically have lymphedema). We decided to first see how the Lasix works out, and also see if my doctor has any other ideas, but it was reassuring to know that there are a number of options still in the wings if we need them.

We talked a bit about how I'm not even sure if some of the discomfort in my hands could be from joint pain, rather than swelling. She did say that joint pain, as a side effect of exemestane, does commonly appear in fingers and thumbs.

She worked on my cording, which continues to improve. She'll be away next week, and I hope my cording won't get worse without the weekly massage. I'll have to be sure to keep up my stretching!

Finally, she had me do some exercises to try to isolate the source of some of the hand tingling. It didn't seem like she could make any clear conclusions, but she did give me one more exercise to do to help relieve tension along my spine.

All told, I think I spent almost an hour in physical therapy today. I left the Cancer Center around 1:30, so it was a 3-hour visit.

Oh, I wanted to mention. During my infusion, my nurse brought me a free gift. Quite frequently, the Cancer Center receives donations to give to cancer patients. People can be so nice! Today's gift was a toiletry/cosmetic bag filled with little useful items.

My posts are usually so focused on my medical journey that I guess I'd forgotten to post about these little gifts. This is actually the third free gift I've gotten. The other two were both like free sample kits from Beautycounter.

1/24/19: Lupron + Physical Therapy Appointment #16

Since I only needed a shot today, I expected to be in and out of my nurse appointment in a matter of minutes. It turned out to be almost half an hour, in a good way.

The medical assistant took my vitals as usual, then walked me to a bay.

I had to wait a bit for my infusion nurse, and then I was pleasantly surprised when my nurse took the time to ask me for an update on my hands feeling numb, tingly, puffy, and "tight". Not sure how to summarize all that into one word, as it's really all those feelings at once; I'll just say it feels "weird".

I've been paying close attention all week. I'm most worried when it feels like it's "asleep". This feeling can last as long as 20 minutes, and I get nervous about permanent damage. Even when the "asleep" feeling wears off, the "weird" feeling can last a couple hours.

Things I've noticed this week:

• Every morning I've woken up to one or both hands feeling weird or asleep.
• If my hands feel weird, using my cell phone before getting out of bed can trigger it to feel asleep. Not sure if this is related to my elbow bending, or my hands gripping the phone.
• If my hands feel asleep, the feeling won't go away on its own. I have to get out of bed, walk around, stretch and swing my arms.
• If my hands feel weird, actions like using a knife or a spatula while making breakfast will make it worse, including feelings of pain and weakness. I have to stop and shake my hands out before being able to continue.
• If I sleep with my forearms propped up on pillows, in a "natural" position, it's possible to wake up without my hands feeling asleep. But they'll still feel weird.
• Getting out of bed immediately to walk around, stretch and swing my arms, seems to help. I feel like I'm warding off the asleep feeling. 

My nurse said walking around might be helping with my blood and/or lymph circulation. She suggested having a kind of arm exercise routine to do first thing every morning. She also suggested asking my physical therapist if I should consider wearing some kind of sleeve, not exactly a compression sleeve, but maybe something like arm warmers.

So the shot itself took only a minute, and the rest of the time was spent talking about all that.

I had my physical therapy appointment right after, and basically went over everything again with my physical therapist.

My physical therapist figured it's nerve related. She stretched each arm in three specific ways to see which positions might trigger the weird feeling. It was hard to tell because my hands were still feeling weird from this morning's episode, but definitely a couple positions made it worse. She also moved my head and neck in specific ways, but none of those positions triggered any weird feelings.

She gave me "nerve glide exercises" to help release any pressure on my nerves. Not these exactly, but along those lines.

Regarding my nurse's sleeve suggestion, she said it probably wouldn't hurt to try it, but wearing something tight on my arms, and not my hands, might actually make my hands feel worse.

It occurs to me that if these problems are nerve-related, then maybe it's a side effect of the double mastectomy, not any of my medications. But why now, 5 months later? Maybe some nerves are having trouble growing back?

Anyway, my physical therapist also worked on my cording, and it helped a lot!

I have to say, I'm kind of annoyed at this "two steps forward, one step back" kind of progress. I'm moving forward in my treatment schedule, and my cording finally seems to be improving, but now I'm hit with this very concerning numbness and tingling and swelling in my hands.