10/1/20: Port Removal

The port is out! 

It's covered with dressing that I can't take off for 2 days, and I'm told there are steri-strips under that, so it will be a while before I can tell what the scar will look like.

Ken drove me into the city for this appointment, and the first thing we noticed is that the mask compliance rate of people walking around in the city is WAY higher than in our suburban hometown.

Ken walked me into the hospital but then waited outside for the duration of my appointment.

The area I was brought to in the interventional radiology department was a big open space with a nurse's station in the middle and bays of hospital beds along the perimeter, separated by curtains. A nurse took me to a bed and had me change into a gown. She took my vitals and then gave me an IV. It took her two tries! The first time she stuck the needle in, poked it around, said it's not working, and then pulled it out. She then tried again in a different place, and it worked, though there was some bleeding. I've had several IVs by now, and that's never happened before, but I just shrugged it off.

A physician's assistant came to speak with me, and it was the same one I saw in January. He was easy-going and more of a jokester this time, which actually came across as less personable to me, like he was using the humor as a kind of shield. I told him about both of my concerns - the leftover non-dissolveable stitch and the messiness of the ugly scar. I felt like he was dismissive about both things. Of course he said, "If there's something in there we'll take it out," and, "We'll do our best to make it look nice," but they just felt like "the right thing to say," I didn't get a sense that he really cared.  

I was rolled into the operating room, where 4 nurses busied themselves getting me ready. They were all very nice. I was pleased that multiple people along the way took note of my chlorhexidine allergy, and one of the nurses said right away that they would use Betadine instead. 

The doctor came in after I was already prepped, and he didn't introduce himself to me at all. I was reminded that I actually liked the doctor who performed my port placement; he was friendly and he explained what he was doing while he was doing it. This doctor didn't say anything at all; I hope that means he was concentrating on the procedure.

I was given some kind of sedative for the procedure, so my mind was foggy, but I think I did try to mention the leftover stitch. I have a vague notion that I said something just as the doctor was getting started, so that I could be sure he was aware of the stitch, but I can't remember the details. I think I dozed off during the procedure. As he was finishing up, I asked him if he found anything, and he said no. Maybe it wasn't a stitch after all? Maybe it was, and it's still in me? It occurs to me that maybe he would say no even if he did find something, like maybe they shouldn't admit that they left a stitch in me for almost a year.  

The procedure went fine in that the port was removed and nothing went wrong, but I didn't leave feeling like my concerns were addressed. I think I would have gotten a more satisfying experience at my local satellite hospital, but I still think if I end up having any kind of healing problems later, if the port was removed by the same doctor as before, I'd blame him. So, I don't regret going to the main hospital for this procedure; this way, if I have problems later, I won't feel like it's anyone's fault, it's just what happened.

Anyway, I was given some ginger ale and graham crackers while waiting for some of the sedative to wear off. After maybe 15-20 minutes, they had me call Ken, and someone walked me to the main entrance to meet him. The whole visit was less than 3 hours.

Every person I encountered during my appointment, when they found out I was there to get my port removed, gave me a hearty, "Congratulations!" But somehow, instead of wanting to cheer, I felt like crying. I don't know if it's a sense of relief that a big part of my treatment is over, or what, but I do feel kind of discombobulated. In a weird way, I sort of feel the same as I did when I got the port placed. Like something has changed, and something else is about to start, and I don't know what it's going to be like. 

The area where my port was is sore and stings a little. Maybe I will take a Tylenol before bed tonight.

1/3/20: Interventional Radiology Appointment

At this appointment, there was a chance I might have the port incision line re-opened and re-sutured. Since technically that would be a surgery, I couldn't have anything to eat or drink for 8 hours before the appointment, and I wasn't supposed to drive myself, just in case. I was glad to have Ken do the driving, since this appointment was at the main hospital in the city.

Going into the appointment, the medical assistant tried to confirm that I was there for a port placement. I explained the situation as briefly as I could, and she said she'd have a nurse check in with me.

I was taken to a bay somewhere in the radiology department. I changed into a gown, and got settled into a hospital bed. Ken sat in a nearby chair, and we did a lot of waiting.

First, very quickly, a nurse did come by and confirmed that a doctor would look at my incision and decide next steps.

After a while, a physician's assistant (PA) came by. He asked for the full history of my port incision. I told him the whole story, and even pulled out my cell phone to show him some photos.

This is what it looks like now, pretty much the same as it looked before the re-stitch, only a little redder.

3.5 months after port placement.
Entire incision not closed.

The PA listened carefully, and was very friendly, but then said the doctor would be the one to decide what to do.

When the doctor came in, he was not the same person who performed the original port placement or re-stitch. He also asked to hear the history of the port incision, but he seemed not quite as interested as the PA was. I got the feeling the PA probably already told him the highlights.

The doctor weighed the benefits of re-opening and re-suturing the line against the possible risks. The fact is, the port works, and it's not infected. Those are the two most important things. If they open up the incision to re-suture it, the risk of infection goes up. And if it gets infected, there's a chance the port would have to be removed, which means I would have to finish my treatment by getting my infusions through a regular IV, which everyone says is hard on your veins and not ideal. As ugly as the scar is, there is no medical reason to re-open the wound, so the doctor advised against it. Re-suturing the scar would be entirely for cosmetic purposes, and I would have had to ask for it against the recommendation of the doctor.

I'm disappointed about having an ugly scar for 10 more months, but as risk averse as I am, I agree with the decision to not invite an increased risk for infection.

I asked whether or not the wound could be "cleaned up" when I get the port out at the end of my treatment. The PA talked about trying to excise some of the scar tissue and using non-absorbable sutures to try to get a clean closure, but the doctor was much more circumspect and basically took a "we can't guarantee anything but will do our best" kind of line.

It's worth noting that I didn't get to choose which interventional radiologist I saw. I asked when I made this appointment, and the scheduler said I would see whoever is working at the time of my appointment. It just seems so random.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

12/16/19: Phone Calls

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

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

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

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

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

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

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

I drove myself again today. It was totally fine.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

11/27/19: My Port Incision was Re-Stitched

Yesterday, a nurse in the radiology department called. She said she saw the photo of my port incision (presumably the one my infusion nurse took), and it needs to be re-stitched!! She got me in today to see the same doctor who performed my original port placement surgery.

As an aside, I'll mention that later in the day yesterday, I actually got a second call from a different nurse, this one from the interventional radiology department in the main hospital in the city. She had the exact same message for me, only she scheduled me to see a doctor next week in the city. I told her about the other nurse, and the other appointment at my local satellite location. She said to keep the local appointment, and then apologized for the confusion. I said it's okay, it's nice to know that all the right people are looking at my case and trying to help!

Anyway, so today's appointment was quick, only like half an hour.

I put on a gown, walked into the operating room, and laid down on the table. The doctor said the incision looked good in that it's not infected, and it looks like it's healing fine under the skin. He said it looked worse in the photo.

He started to clean the area around the port. As he was applying the antiseptic, I thought to ask, "Is that chlorhexidine?" It took me a moment to speak up as I realized what he was doing, and I wondered if he had seen my chlorhexidine allergy in my medical file. But I guess I can't assume people will see it! I told him about the rash I got after the port placement; it's not like a serious reaction, but probably worth avoiding if possible. Without missing a beat, he reached for a towel and very calmly said, "Okay, we'll just wipe this off." It was kind of funny. So then he asked the nurse for some Betadine, but they didn't have any in the operating room. The nurse left to get some, but I guess the doctor got tired of waiting, because he decided to clean the area with alcohol.

I got 2 injections of local anesthesia. The pinch and burn hurt a lot! But then I didn't feel a thing as the doctor stitched up the incision with regular sutures. He asked me casual questions about Thanksgiving while he worked.

I have no idea what the stitches look like, they're covered with gauze and Tegaderm. The doctor said my nurses can remove the dressing on Friday when I go in for chemo, and he'll tell them they can remove the stitches next Friday.

Now that the local anesthesia is wearing off, the area kind of stings. I just hope the incision heals properly now, so it can be one less thing to worry about!

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.