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.

1/17/20: 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.

1/2/20: Physical Therapy Appointment #13

I had a physical therapy appointment scheduled for today. I thought about cancelling it, but didn't, figuring maybe it would be good to think about something else for a while -- even if it's cancer-related.

It felt a little strange to be out in the world with people who don't know about my mother's passing. This observation is somewhat ironic because, ever since I was diagnosed, it felt weird to be out in the world with people who didn't know about my cancer; going to the Cancer Center was always something of a relief because I was surrounded by people who not only knew, but really understood what I was going through.

It's funny how life can be so compartmentalized. This set of people know about you in this way, and that set of people know about you in that way.

As it turned out, it wasn't as compartmentalized as I thought. Going in, I planned to not mention my mom. But during my appointments, when my physical therapist is working on my cording, we usually pass the time talking, and last week I had mentioned that my sister was visiting because my mom wasn't doing so well. So today, being as thoughtful as she is, she asked how my mom is doing. And so I told her, and I cried, and she brought me some tissues. Then she just very naturally talked a bit about when she lost her grandparents, and how her cousin is a funeral director. It was good, and she gave me a big hug before I left.

I really do think that all the people on my medical team, every one of them, are well-suited for their careers. Presumably they are also well-trained, but they always seem to know just how to handle every situation, how to say just the right thing.

Anyway, since today's appointment was in the physical therapist's office, I was properly lying down, and the physical therapist said she could get a better angle on the cording than when I am in an infusion chair. She seemed surprised that I was not in pain at times, because she pushed pretty hard, and I said it's probably just because my underarm is still numb from surgery.

Since my cording continues to persist, she suggested I do my stretches with my arm bent at the elbow, so the cord itself doesn't get pulled when I stretch. She wasn't sure, but thought maybe we can see if it helps if I actually give the cord a break for a while.

She also mentioned that the arm measurements she took last time had my right arm at only 2% bigger than my left, which is within the normal range for a dominant arm. Maybe it was swollen at the time my nurse mentioned it, or maybe not. I'm relieved I don't have to worry about lymphedema after all, at least not now.

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

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

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

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

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

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

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

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

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

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

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

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

I finished the Hercerptin at 12:30.

The Lupron shot was quick.

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

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

12/20/19: 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.

9/25/19: Port Placement

Okay, this port placement surgery was unexpectedly significant!

In my mind, it was just a step on the way to chemo. I didn't really think of it as a surgery in itself.

Mostly it's just a lot more painful than I imagined. The oncology nurse did say that I might want to use any leftover oxycodone, so maybe the pain should not have been a surprise. I think I figured, since I got lucky with a relatively pain-free DMX, maybe I'd get lucky with this port placement too. Boy, was I wrong!!

It's a stinging pain. I took 2 doses of Tylenol (1000 mg), and it helped. I even pulled out my wedge pillow again because it hurt so much to lie flat. It also hurt trying to get up from a lying down position.

Anyway, here's how the procedure went.

Checked into radiology. When I got called, the nurse said that Ken would be more comfortable in the waiting room, so he stayed behind. In retrospect, there was a chair in the prep area, and it would have been nice if Ken could have come in with me.

I was taken to a kind of multi-purpose prep area. The nurse took my vitals and gave me an IV, I think for antibiotics, which she said was just standard procedure.

When I got my sentinel lymph node biopsy, I picked up on inconsistent chatter in Facebook support groups about how you shouldn't get blood drawn, injections, or blood pressure taken using the arm that had lymph nodes removed. Some people said that if you had lymph nodes taken from both sides, you're supposed to use alternate locations, like a leg for blood pressure. Mostly these precautions are meant to prevent lymphedema. I specifically asked both my NP and breast surgeon about these concerns (though it looks like I forgot to mention it in my blog posts...), and they both said that those recommendations are outdated. This informational page from Memorial Sloan Kettering Cancer Center agrees. The only caveat is if you did have lymph nodes taken from both sides, you should "talk with your doctor" about which arm is best for blood draws and injections.

All this to say, since my surgery, I've been careful to get blood drawn and blood pressure taken from my left arm, which had only 1 lymph node removed (compared to my right, which had 5). But for the port placement, I used my right arm again for the first time. I asked for the IV to be put in my left arm, but that meant that during the surgery itself, they used my right arm to monitor my blood pressure. I was a little nervous about it, but it was fine.

Going in, I wanted to ask for the port to be placed on my left side. I figured, since my right side is still bruised and numb, maybe I should give it a break, and spread out the discomfort, especially since I'm right-handed. When talking with the doctor who would perform the surgery, he said ports are usually placed on the right, but maybe 1 in 10 cases he puts it on the left. I wanted to make sure that medically speaking, there weren't any additional risks if I had my port on the left, since it was only comfort that was driving my preference. I wavered, but he reassured me and just said, "Let's put it on the left."

I walked into the operating room and hopped up on the table. Five people busied themselves around me, including the doctor and 2 nurses. I think the other 2 people were imaging technicians.

I lay face up with an IV in my left arm, blood pressure and oxygen being monitored on right arm, and 3 electrodes attached to my torso to monitor my heart. I got oxygen through my nose, and they covered me with surgical drape sheets from the neck down.

The doctor cleaned the area. I felt the painful pinch of the injection of local anesthesia. I had read that some patients get general anesthesia for this procedure, but I was wide awake the whole time. I could feel some pressure and pulling sensations.

I don't know for sure, but I think the surgery lasted maybe half an hour, maybe a bit longer. At one point, the nurse saw something on the heart monitor. She said the catheter part of the port was "tickling" my heart; it was too close, and the doctor would have to reposition it. The doctor asked the technicians for a picture of my heart, then a "live view". He pushed and pulled on the port for a bit, then asked for another picture and live view. He pushed and pulled again, asked again for a picture and live view, and was satisfied.

When the surgery was finished, the nurse went to get Ken so he could sit wtih me until I was cleared to go home.

To place the port, there are actually two incisions, one below the collar bone for the port itself, and one above the collar bone at the base of the neck. Immediately after the procedure, the area was still numb, so I hardly felt any discomfort at all. But a couple hours later, presumably when the local anesthesia wore off, the top incision really hurt!! Even with Tylenol, if I so much as sniffed my nose, it hurt.

By the time I went to bed, both incision sites hurt, especially if anything touched the area.

There is dressing on both the port and the incision above it. I can remove them in 2 days.

9/5/19: (13 Days Post-DMX) NP Appointment - Drains Out + Pathology Results

Lots to report today!

When I called (two days ago) to make my appointment to get my drains out, the output was < 30 mL per drain per day for 2 consecutive days. After that, the output was < 20 mL per drain. I feel good about the drain output being even lower; I'm hoping it means I'll be less likely to develop a seroma.

Ken went with me to today's NP appointment. He had to drive me, plus I had a lot of questions, so I wanted him there to help make sure I asked everything on my list, and to be an extra set of ears to make sure I understood all the answers.

First off, getting the drains out didn't hurt at all, but I think that is mainly because my chest area is still numb! I didn't realize it before because I've generally avoided touching the areas around my scars, but as the nurse was cutting the sutures that held the drain tubing in place, I could only feel some slight pressure. The NP instructed me to take a deep breath, and she pulled the drain out during my long, slow exhale. I honestly felt nothing. Other people had warned me that it would feel "weird", and I'm sure it would have, if I could feel anything.

What was weird was how much tubing was inside me! It was like 10-12 inches on each side. Crazy.

I asked about the numbness, and the NP said it was normal. She said other patients sometimes reported feeling coming back in patches, first in one area, then another, etc. Maybe this is why I haven't felt much pain; any pain would be masked by the numbness!

I also asked about my range of motion, and whether or not I should be doing any arm exercises. She gave me 3 exercises to do, but emphasized that I am still in the "early" stages of recovery, so I have to be careful not to do too much just yet. (She said to expect recovery to take up to 6 weeks.) She said my current range of motion is about what would be expected, so it's too early to worry about physical therapy. If I don't see much improvement over the next few weeks, they can certainly refer me to physical therapy later.

She said I can start driving any time I feel comfortable, now that the drains are out. I think my arms are still weak, so I don't plan to drive any time soon. Definitely not this weekend. I'll see how I feel next week.

She also recommended I keep wearing the surgical bra and compression band at least through the weekend because the compression helps to prevent fluid from building up (which could lead to a seroma). Without the drains, any fluid that is produced now just gets reabsorbed into my body. After the weekend, I can gradually taper off the use of the bra and band as I feel comfortable.

I mentioned that my right underarm is more numb than my left, and the numbness extends down my arm almost to my elbow. She said it was too early to worry about lymphedema, and maybe my right side felt worse because I had more lymph nodes removed from that side.

So, our conversation naturally segued into my surgical pathology. I was pleasantly surprised when she said she had a copy of my pathology report for me! (Ever since I got the good news, I've been checking the online patient portal daily to see the actual report, but it hasn't been posted.)

I had 1 lymph node removed from my left side, and 5 lymph nodes removed from my right side (the side known to have cancer). No cancer was found in any of the lymph nodes.

The report indicated negative margins greater than 5 mm, which means no cancer cells were found within at least 5 mm of the outer edge of the removed tissue.

The left and right tissue specimens weighed about the same (within 2 grams of each other). I had wondered if more breast tissue was removed on my right side (which might explain my concavity), but the "depth" of the right specimen was actually 0.9 cm smaller than the "depth" of the left specimen. So I guess there's no obvious reason why my right side is a bit concave.

The surgical pathology report listed the size of my tumors as 14 mm and 10 mm. The cancer invaded the skin and involved the nipple.

I actually saved the most interesting piece of information for last. The pathology report also found cancer in my left breast!!! A tubular carcinoma, 4 mm. This tumor is probably what the MRI showed, the area that didn't show up on the mammogram or ultrasound, and that they wanted to biopsy (which I cancelled after I decided to get the double mastectomy no matter what). This certainly validates my decision to get a double mastectomy!!

So, ultimately, I had bilateral breast cancer. Both breasts affected, three tumors, all different types of cancer.

I'm just so glad and relieved that the surgery was successful, and all that cancer is out of me now.