6/27/22: (11 Days Post-BSO) My Medical Oncology NP Messaged Me

She sent me a message in the online patient portal, just asking how things are going.

I know she can see all my medical notes online, but I sent a response assuming she didn't read any of it. Basically I just gave a very brief summary of my appointment with the GYN surgeon, mentioning the bruises, the swelling, and the scar tissue. 

I'm still taking ibuprofen and applying a cold compress to the left incision. The swelling is getting better, and the big bruise has improved considerably. (It's mostly light purple, green, and yellow now.) The scar tissue bump feels the same, and so far no change to the other bruise. I haven't needed Colace for a couple days now. 

6/24/22: (8 Days Post-BSO) Incision Check Appointment

For the record, Tuesday was the first day I didn't take any ibuprofen.

My left incision continues to be the limiting factor of my recovery. The bruise is huge so I know it will take time to go away. The colors seem to be changing from dark purple to light purple and green, so I think that's a good sign. When I walk, it's that left incision that causes discomfort and makes me walk slower and a bit hunched over, with my left hand supporting the incision area. 

All that's fine, but last night I noticed a small, firm lump at the left incision site. I don't know if it was something new, or if I had previously assumed it was just part of the bruise-related swelling, but last night it felt separate from the bruise. 

First thing this morning I called the GYN surgeon's office and described both the bruise and the bump. The same nurse who called me last week gave me a call back. She said because it's Friday and we're going into the weekend, it would probably be good to "get eyes on it", so she scheduled me in for an appointment later this morning. I was so thankful and relieved because I definitely wanted someone to look at the bruise and feel the lump. Also, luckily, the doctor happened to be in the office today, so the nurse said the doctor could even take a look herself. 

After checking in, I met the nurse, who was just as friendly in person and really had a vibe of wanting to help. There was also a second nurse, who I assume was a student. The friendly nurse had me lie down on the examining table, and she looked at the bruise and bump. Most surprisingly, she also commented on "this other bruise" on my pubic bone. (Sorry for the TMI.) I had not even noticed this bruise! I couldn't tell them when it appeared. It doesn't hurt, and I guess I just didn't look down there.

She asked me a lot of questions to make sure there were no other complications, and then she left to get the doctor.

The most important thing is that the doctor used the words "not worried". I'm a big worry-wart, so I latched onto those words for reassurance. 

While the doctor was examining the bruise and feeling the bump, the nurse removed the Steri-Strips on both the left and right incisions. (The bellybutton only had the dressing that I removed before showering on Saturday, no Steri-Strips.)

First, the doctor said that she's not surprised that the left incision area is bruised because that incision was bigger (about 1 cm instead of 0.5 cm), and it sounded like that side took more of a beating. (My words, not hers.) She did seem surprised that the bruise was so large; end-to-end it's about as long as my hand. 

She was perplexed about the bruise on the pubic bone, though. She said no part of the surgery extended down that far, so she didn't know why that area would get bruised. She speculated that maybe some internal blood flowed from the big bruise downward, but there was no other bruising in between that might have supported that theory. The nurse used a skin marker to outline the edge of this bruise. I should keep an eye on it, and call the office again if it gets bigger. 

The doctor asked if I bruise easily, and I said I don't know, but maybe, because I do remember bruising when I got a biopsy, and it's not frequent, but also not unusual, for me to bruise up when I get my blood drawn. She guessed that maybe if I bruise easily, even the smallest trauma could cause one. In any case, there's not much that can be done about the bruises, just let them heal on their own, which can take a couple weeks. 

Regarding the lump, the doctor seemed very confident that it's scar tissue. She said it may take a couple months to go away, though many sites online suggest scar tissue might never go away. I asked if I should massage the site, and she said it can help, but it's not something I should do until later, after the incision is fully healed. 

They also advised me to ice the left incision, I think to help reduce the swelling. For the same reason, the student nurse suggested I start taking ibuprofen again; even if I don't need it for pain, it's also an anti-inflammatory drug, so it can help reduce the swelling around the bruise. 

At this point, it seemed like the next course of action is just to monitor the bump and bruises, and call back if they seem to be getting worse, like if they become bigger or more painful, or if I get any signs of infection, like a fever. I said I might be taking a trip this summer, and I'm worried that I'll be out of the state when something goes terribly wrong. This is when the doctor said she's "not worried", and said recovery will just take some time.

The two nurses said I just need to be patient and let my body heal. I should listen to my body and not overdo it. It's frustrating because of the "laparoscopic surgery is easy" narrative, but my nurse pointed out that it's still surgery, so I should keep in mind 6-8 weeks as the full, back-to-normal recovery timeframe.

6/21/22: Pathology Report

I saw my pathology report online on Tuesday, but I wanted to wait to hear from the doctor before posting anything. I haven't heard anything yet, though, so I just decided to post anyway. 

According to the report, the fallopian tubes were "unremarkable". There was a 1 cm ovarian cyst in both ovaries, and the right ovary had an additional 0.6 cm paratubal cyst. 

I assume everything is fine because there weren't any alarming words like "carcinoma". 

I'll post again if I hear anything more.

6/21/22: (5 Days Post-BSO) I'm Feeling a Little Better Every Day

The day of my surgery, I was taking both acetaminophen and ibuprofen. On Saturday, I went down to 1 prescription-strength ibuprofen (600 mg) a day. Surprisingly (to me), I noticed that when the ibuprofen wore off, I could feel pain in my throat, presumably from being intubated for anesthesia. This morning I woke up without much pain anywhere, so I'll see if I need the ibuprofen today.

My bellybutton (where an incision was made) and the right incision actually feel practically normal. The left incision, where the giant bruise is, still feels tender, swollen, and mildly painful. It's basically just this big bruise that makes it difficult to walk and sleep. To be honest, if I didn't have that bruise, I think it's possible I would feel almost recovered! That would explain why so many people refer to laparoscopic surgery as "easy" - maybe it is, if you don't get bruised. The NHS in the UK says only 1-2% of laparoscopy patients have minor complications, including bruising. Again with me experiencing a "less common" outcome! What's up with that!? It's getting pretty frustrating.

Anyway. I'm easily drinking 80-96 oz. of water a day. I didn't drink nearly this much water before surgery, even when trying to drink more water for the sake of my liver, but I guess my body really does need it. Even when I wake up every 2-3 hours in the middle of the night to pee, I'm thirsty. 

Waking up to pee prevents me from sleeping well, but also it's hard to get comfortable with that bruise around the left incision. Still, I've noticed that when I get up each morning, I really do feel a little better. Like it hurts a little less when I cough, or I can clear the excess mucus a little better, or I can walk just a little faster. 

My shoulders are much improved. I'm still taking the prescription-strength generic Colace. 

Both my dad and my aunt brought me homemade Chinese chicken soup, so I've been eating that for at least one meal every day, sometimes two! It makes me think I really ought to learn the recipe so I can make it for others when I'm an Asian elder.  

6/21/22: I'll Continue to Be Careful About Covid

It occured to me to wonder if having a prolonged QT interval might be a risk factor for serious illness if infected with covid.

I found a few articles about covid patients developing QT prolongation when treated with certain medications. This one says "QTc prolongation occurs in COVID-19 illness and is associated with poor outcome."

But it's more difficult finding information on how pre-existing QT prolongation might affect a covid prognosis. I found only one article about one patient who had existing QT prolongation, and it says "COVID-19 illness itself can potentially lead to further prolongation of QT interval and unmask fatal ventricular arrhythmias in patients who have a prolonged QT and low repolarization reserve at baseline." But I honestly don't think much can be made from one patient who is older and also had multiple medical conditions.

I guess it doesn't really matter what QT prolongation means in terms of covid because it wouldn't affect the way I take covid precautions. I am already super careful because according to the CDC, I have anywhere from 1 to 3 medical conditions putting me at high risk, not even including the borderline QT prolongation:

1. About having a history of cancer, the CDC says (emphasis mine): "[H]aving a history of cancer may increase your risk."
   
   
2. About non-alcoholic fatty liver disease, the CDC says: "Having chronic liver disease can make you more likely to get very sick from COVID-19."
   
   
3. About my heart function which may or may not still be reduced compared to my pre-Herceptin baseline, the CDC says: "Having heart conditions such as heart failure... cardiomyopathies... can make you more likely to get very sick from COVID-19."

Lots of uncertainties in there, but I'm not eager to find out how I do with covid, so I'll keep up preventative measures as long as Community Transmission is not low.

6/17/22: (1 Day Post-BSO) The GYN Surgeon's Office Called Me

Yesterday the PACU nurse told me to expect a call today from my surgeon's office.

The nurse set my mind at ease about the large bruise on my left incision. She said it's typical and not to worry unless it gets worse rather than better. 

She also clarified instructions I had about my Steri-Strips. I should take the dressing off before showering on Saturday (2 days after surgery), and leave uncovered until the strips fall off on their own, but if they haven't come off in 2 weeks, then I can gently help them off while in the shower. 

She was very nice, but I don't feel like she was particularly knowledgeable or attentive. I mentioned having excess mucus in my lungs that is difficult to cough up. She recommended holding a pillow to my incisions when trying to cough, but otherwise said to treat the cough as I would normally, like with cough drops. She did not address the mucus build-up, and when I later looked at her notes in the online patient portal, she said I had a "dry cough"! 

I also mentioned that if there's excess mucus in my nose, and I try to sniff it up, it actually hurts my lungs/chest, and that it feels especially good when I take deep breaths. I was hoping she would respond with deep breathing exercises, which are highlighted in articles about BSO recovery and surgery recovery in general, but she didn't. I will just continue with the deep breathing anyway.

When I described my shoulder pain, she said it was probably from being placed in an uncomfortable position during surgery. She did not attribute it to the gas pumped into my abdomen during surgery, which was the explanation offered by the PACU nurse and also these articles about BSO surgery.

She did remind me to drink a lot of fluids, and to walk around to help relieve constipation. Mostly she wanted to make sure I knew when to call the doctor, like if I have heavy bleeding, increasing pain, or signs of infection.  

I also scheduled my follow-up appointment, which will be in 3.5 weeks.

I have to say, a lot of people, including many in Facebook support groups, made it sound like recovering from an oophorectomy is easy-peasy compared to a double mastectomy. I mean, sure, it's relatively easier, but I still think it's objectively difficult. Presumably the recovery time will be shorter (about 1-2 weeks), but during that time, there's still plenty of pain and discomfort to manage.

6/16/22: Bilateral Salpingo-Oophorectomy (BSO) Surgery

I feel pretty fortunate that I've been so pleased with the care I've gotten from my hospital network, and today was no exception. It really felt like they were taking good care of me. My post-op nurse especially made me feel like I was in good hands.

We arrived at 6:00 AM for my 7:30 AM surgery time. Actually, we arrived a bit early, and saw 2 other cars with patients waiting inside. Apparently, the entrance doesn't even open until 6:00 AM. 

When I had my pre-operative phone call, the nurse had told me that I would not be allowed to wear an outside mask, and I'd have to swap it out for the hospital-provided surgical mask. Since I always wear a KF94, I was worried I'd have to downgrade my mask, a problem that has happened in other hospitals. But I just quietly put the surgical mask on top of my KF94, and nobody stopped me or said anything. 

I had a short wait, then was taken to a pre-op room. I changed into a gown, and a nurse took my vitals and put an IV in my left hand. She also had me take 2 Tylenol to get a jump on pain relief. I've been trying to steer clear of Tylenol to help my liver situation, but figured it'd be okay to take a few doses for surgery.

One of the anesthesiologists, as she read through my medical notes and asked me questions, paused and said one sentence that actually meant a lot to me: "I'm sorry you've had to go through all this." I've seen a LOT of healthcare workers outside oncology, including imaging technicians and staff from cardiology, hepatology, GYN, and my PCP's office. Every time my medical history is reviewed, the person is generally kind and professional, but they have always stopped short of being compassionate or acknowledging that all the cancer treatment and complications might actually be taking some kind of toll on me - until today. I don't blame them, and I understand the need to stay objective and even stoic, but just having a medical professional look at my history and validate that it is a lot for someone to go through was comforting. (I should mention that my entire oncology team has always shown compassion and understanding, that's just one of many reasons why I appreciate them.)

Anyway. I got the anesthesia. One second I'm sitting in the hospital bed, being transported to the operating room, not even feeling drowsy, and then bam, the next thing I know, I'm feeling groggy in a post-op recovery bay.

There was no clock in my pre-op room, so I don't know if the surgery started on time at 7:30 AM. The GYN surgeon had estimated 1 hour, but Ken said she called him around 9:15. I don't know if we started late or if the surgery took longer than expected, but she said everything went fine. Ken said the surgeon told him I'd be ready for pick-up in about an hour, but I didn't get discharged until roughly 2 hours later, around 11:15. 

When I woke up, I noticed right away that I didn't have a mask on. I figured it was okay because I was in my own bay, my nurse was masked, and she had set out some water, apple juice, and biscuit-type cookies for me. Once I finished eating and drinking, I asked for my glasses, took a new mask out of my bag at the same time, and looked at the clock.

It was just after 10:30 AM, so I think I must have woken up around 10:15 AM. I'm guessing I stayed under longer than the GYN surgeon anticipated. I was in the PACU (Post Anesthesia Care Unit) for about an hour, with a dedicated nurse.

There was an ice pack on my abdomen, covering the three incision areas. Also, there were inflatable sleeves on my calves, I assume to prevent blood clots.

The nurse warned me that my shoulders might hurt, a consequence of air being pumped into my abdomen during surgery, to make room for the surgeon to perform the procedure! I don't see how air in the abdomen affects the shoulders, but indeed, my right shoulder started to ache in the car ride home, and later my left shoulder started to ache too. In fact, the pain in my shoulders made it very difficult for me to sleep that night. This very helpful page about BSO surgery says the shoulder pain should go away in a few days, and walking around will help.

Also, presumably because of that air (actually, I later saw in my online medical notes that it was carbon dioxide) my belly felt bloated.  The bloating caused a lot of discomfort and was also a factor in not sleeping well.

On the drive home, I used a small pillow to cushion my abdomen from the seat belt, a trick the pre-operative phone call nurse had recommended.

The anesthesia definitely hit me harder this time than when I had my double mastectomy. I was still groggy and nauseated when I was discharged, and it took several hours to go away. I even threw up as soon as I got home. (The nurse had anticipated this and had given me a barf bag for the ride home, though it was labeled "emesis bag," so I learned a new word!)

Once I was home and settled into bed, I noticed the area around my left incision was bruised, which was a new development. The bruise was about 4 inches across and dark purple. The PACU nurse hadn't warned me about that, so I was relieved to find bruising mentioned on this BSO informational page. She did give me 2 cold compresses, which I promptly put to work over the incisions.

Walking is difficult, but since walking helps the recovery process in many ways, I've been making an effort to get up and putter around the house a bit. 

After a while, I noticed an increase in mucus in my lungs. Moreover, it's hard to cough up because coughing makes my incisions hurt. I found this web page that says anesthesia can hamper normal breathing and cause mucus to build up in the lungs. Moving around and coughing should help. Interestingly, both the Memorial Sloan Kettering Cancer Center and the WebMD web sites mention an "incentive spirometer," but I didn't get one. I found this laparoscopic oophorectomy informational page that mentions "breathing exercises", then finally found a related page describing specific breathing, coughing, and leg exercises that I can do.

Overall, I'm doing alright. I am taking prescription-strength ibuprofen (600 mg), which keeps pain at bay as long as I take it on schedule. I've also been taking prescription-strength generic Colace (100 mg) to help with constipation. I can walk around slowly, standing a little hunched over. The only other thing worth mentioning is that it feels kind of hard to talk, like I have to talk slowly; I figure it's somehow related to the bloating and/or mucus in the lungs, and needing to take deep breaths.

6/15/22: Phone Calls

Before I had a chance to call my GYN surgeon's office this morning, to make sure everything is in order, the surgery coordinator called me!

She said I am all set for tomorrow, and she also shed some light on this whole "medical clearance" situation.

She said medical clearance is only needed if there's something concerning in my medical history, and the fact that I've seen a cardio-oncologist was likely what flagged me as needing it. Normally, the hospital would inform the surgeon's office about the patient needing medical clearance, and they would take care of getting it, but the surgery coordinator said no one told her, and moreover, she thought it was odd that the hospital would tell me directly, like usually it's something that happens behind the scenes, not something patients have to manage themselves.

Yesterday when I spoke with my oncology nurse after the cardiology appointment, she said she would reach out to the GYN surgeon's office to make sure they saw the cardiologist's notes, since she was basically just a middle man in all this. I realize now that my oncology office, and my oncology nurse specifically, were really going above and beyond by doing the job that the GYN surgery coordinator should have been doing. (My PCP office, on the other hand, was the least helpful of all.)

But I absolutely do not hold anything against the surgery coordinator, who sounded rather put out that she had been left out of the loop. She said she asked the hospital why she wasn't notified, and the person at the hospital seemed to say that they figured everything was all set because I already had an oncology appointment scheduled. But of course, the surgery coordinator knew that she would have been left holding the bag if I wasn't cleared. 

Maybe some people might think the surgery coordinator was being unprofessional by telling me all this, but I totally appreciated it!! I value accountability and transparency, and I feel better knowing what happened versus what should have happened. Having the full story made me feel like it's okay that I was overwhelmed by the last few days, because they objectively didn't go as smoothly as they should have, since I did fall through the cracks a bit. Once again, another clear reminder that we, the patient, have to be our own best advocate!!!! 

Anyway. The hospital was scheduled to call me between 2:00 and 4:00 PM, but they called me early at 1:45 PM. I'm a stickler for planning so I can't say I appreciated being called earlier than scheduled. Ha. They just confirmed my arrival time at the hospital, and also no food or drink after midnight tonight.

Oh, incidentally, I did get a notification from one of the online patient portals saying my covid test was negative. 

6/14/22: Covid Test + Cardiology Appointment

Today I found a good web page that explains QT prolongation. It's much better than the links in yesterday's post.

The short of it is, I don't require any more follow-up in cardiology, and I'm cleared for my surgery on Thursday! Phew. 

I started the day by driving to the surgery hospital for my covid test. 

I got there early, so while waiting for my appointment time, I called my oncology nurse and left a message about my cardiology appointment this afternoon. I was sure she could see the appointment in the online system, but she had asked me to call, and I found it reassuring to be in contact with someone who was basically tasked to help me manage this situation. 

The covid test took all of 10 seconds to administer. The nurse said the ordering physician will get the results. They'll call me if I'm positive, and probably won't call me if I'm negative. 

By the time I got home, I had just enough time to eat lunch before turning around and leaving for my cardiology appointment in the city. 

I gave myself what I thought was a ridiculous amount of extra time, but with a little traffic and a lot of time spent circling up and up the parking garage until I found open spaces, and then walking to the hospital, I got to the Cardiac Clinic just in time for my appointment.

When the medical assistant took my vitals, I was still feeling rushed from trying to arrive on time and stressed from driving in the city, not to mention anxious from just being there for a cardiac issue with my surgery on the line. She took both my blood pressure and my heart rate twice, giving me time to calm down in between. Then she did another EKG.

The cardiologist was all business, with a calm demeanor that probably serves him well in this field. He didn't tell me the QTc value, but he said it was "borderline" prolongated. Interestingly, in line with this article, he took the time to manually re-calculate the QTc. It was still borderline.

I find it noteworthy that in 3 EKGs, the leads on my legs were placed in 3 different places. On Friday (the EKG with prolonged QTc), the leads were placed low on my ankles. On Monday (the EKG with normal QTc), the leads were placed in the middle of my calves. Today (the EKG with borderline QTc), the leads were placed low on my calves, but above my ankles.

Anyway, the cardiologist asked me a bunch of questions about my own medical history and my family's. Do I ever pass out? Has anyone under 60 ever died suddenly and unexpectedly? He said he didn't think I have Long QT Syndrome, which is basically the only potential issue with a prolonged QTc. I just happen to have a slightly longer than normal QT interval.

I forgot to ask what would cause the prolonged QTc, since I didn't have it before. I was just 100% focused on whether or not I would be cleared for surgery. He said yes, I was fine to proceed with surgery, and no additional follow-up is needed either before or after the surgery, but I should schedule an appointment if anything changes, like if I start passing out.

I felt so relieved walking out of the clinic! I got back to my car and called the oncology nurse right away. She said she would contact the GYN surgeon's office and let them know to check my electronic medical record for confirmation of medical clearance. I hope that's that. Tomorrow the hospital is supposed to call, and I might call the GYN's office just to make sure everything's in order.

Once I got home, I checked the online patient portal. I'm glad I have access to my medical notes, because I learned a couple things that were not explicitly discussed during the appointment.

First, I hadn't asked the doctor what exactly my QTc was today, but the report says it was 461 ms, right in the borderline zone according to the QT prolongation article.

Second, the note said that the anastrozole and Lupron may be contributing factors. The cardiologist wrote, "Given her concurrent hormone suppression therapy, would be prudent to continue monitoring QT interval moving forward."

This was my first time hearing about any connection between my hormone therapy and the QT interval. I didn't find any connections when looking up Long QT Syndrome yesterday, but I did find some hits by searching for just "QT" and "Lupron" together. Turns out, Lupron can affect the electerical activity of your heart! Not only that, but QT prolongation is a known less common side effect of Lupron! The QT prolongation article also says that hormonal imbalances could be a cause. 

It seems to me that I am somehow prone to getting the less common but serious side effects of medications. First I got non-alcoholic fatty liver disease from Tamoxifen, now I've got QT prolongation presumably from Lupron. I'm reminded of what my original medical oncologist said, about how Asian cancer patients tend to respond differently to cancer treatment, perhaps in part because Asians are not well-represented in all the clinical trials where side effects are investigated. 

I'm wondering if I should be disappointed that my oncology team never warned me about these risks specifically. I guess I can't expect them to list every single side effect, and I don't think knowing about these less common outcomes would have affected my decision-making; since they are not common, I would have figured I'd be unlikely to get them, even if I knew about them. 

It also occurs to me, should I be upset that they didn't readily connect the dots between prolonged QTc and Lupron? Maybe they did, but the focus right now was figuring out if a prolonged QTc would affect my surgery. And since my surgery means discontinuing Lupron anyway, maybe it's moot. Looking ahead, I may try to ask for an EKG at my next oncology appointment, to see if the QTc returns to normal after stopping Lupron. 

6/13/22: I Really Do Need Medical Clearance

This morning I got an unexpected message in the online patient portal from my medical oncology NP saying there is an abnormality in my EKG!

It looks like my QTc is longer than normal.

First, apparently an electrocardiogram is abbreviated with either EKG or ECG. This page explains "QT" as follows:

"Doctors name the different waves on the ECG graph P, Q, R, S and T. Letters Q through T correspond to the heart cells’ “recharging” (repolarizing) after a muscle contraction. Abnormalities in the heart cells can slow the process of electrical recharging, prolonging the QT interval as shown on an ECG."

This page shows a small image of what the "QT" interval looks like on an EKG graph.

"QTc" refers to "corrected QT interval". This page explains "QTc":

"The QT interval is longer when the heart rate is slower and shorter when the heart rate is faster. So it's necessary to calculate the corrected QT interval (QTc) using [a mathematical formula]."

Anyway, mine was 473 ms. This page says normal QTc range for women is 360-460 ms. 

I started going down the rabbit hole of trying to understand what a prolonged QTc could mean. There's a condition called Long QT Syndrome (LQTS), but I don't think I have it because the congenital form is rare and I have no symptoms; there is an acquired form, but I'm not taking / don't have any of the medications or conditions that cause it. Also, I found this random page that says computer error or lead misplacement can cause inaccurate QTc calculations. So that's probably what it is, right?

Okay, all of that was just a long preamble. The point is, my oncologist could not clear me for surgery with this prolonged QTc, so they want me to see my PCP. My oncology office actually coordinated with my PCP office so before I even had a chance to call my PCP, they called me and had already set me up with a same-day appointment. My PCP did another EKG, and lo and behold, it's normal. The QTc today was 426 ms, perfectly within the normal range. Great! 

But no. My PCP said she still could not clear me for surgery because what about Friday's EKG? We don't know for sure that Friday's report was inaccurate, so what does it mean if my QTc is fluctuating wildly? So, my PCP wants me to see a cardiologist. 

In retrospect, I'm annoyed because if my PCP would not have cleared me for surgery no matter what - even with a normal EKG - then why did we waste time going through my PCP at all? Why didn't my PCP tell my oncologist to just send me directly to my cardiologist? Plus, she told me to call the cardiologist myself, adding, "If you have trouble making that appointment, let us know, and we'll help out." Since this is super time-sensitive, it bothered me that she didn't have her office just make the appointment for me, the way my oncology team did for this PCP appointment.  

I went straight home and called my cardio-oncologist. I called the first number I found, and I think it was a scheduling line. At first I asked for an appointment with my own cardio-oncologist, and then I said to check the schedule for any cardiologist, but of course there were no openings before Thursday. The scheduler said she would send a message to my cardio-oncologist's office about my situation, and they would call me back.

In the meantime, I called my Cancer Center. A nurse had called this morning to make sure I had the PCP appointment scheduled, and she had asked me to call her back with an update after the appointment. I told her about trying to get a cardiology appointment, and she was quite surprised - and dare I say annoyed! - that the PCP's office didn't set that up for me. She said quite frankly, "They should be facilitating that for you." 

Surprisingly, in the middle of that phone call, the cardio-oncologist's office called me. That was quick! I took that call, and explained the whole situation again to the nurse. She was very sympathetic, could hear that I was getting emotional and tearing up, and she said she'd talk to the cardiologist and get back to me.

I called the oncology nurse back just to update her on that phone call. She said it sounds like I did a good job advocating for myself. We'll see if the cardiologist's office calls me back tonight, and either way, I should call the oncology nurse again tomorrow morning with another update.

At this point, I left the house to pick up my son from school. When I got back, there was no message from the cardiologist's office, so I decided to call my PCP's office and let them know I do need their help getting an appointment! I explained the entire situation again to the person who answered the phone, and she said she'd talk to the doctor about it. 

Incredibly, the cardiology nurse did call me back! Just before the end of the work day. She said my regular cardiologist doesn't have any openings, but she made an appointment for me at the "cardiology clinic", like an urgent care clinic just for cardiology. Thankfully, the appointment time does not interfere with the pre-surgery covid testing I'm supposed to get tomorrow morning, but I'll have to drive to the main hospital in the city. I'm nervous that there will actually be a problem and I won't get cleared for surgery, but at least I have an appointment. I thanked the nurse profusely! She was so kind and patient, she even said, "Everything will work out, I hope this helps to reduce your stress." So compassionate of her to say!

I am slowly starting to brace myself for the possibility that I will need to postpone my surgery. I really hope that doesn't happen because I've already been laying low for about a week now, to reduce my risk of covid exposure, and I just don't want to have to do all this surgery planning again, coordinating among oncology, GYN, PCP, cardiology, and the hospital!! GAH!!!

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. 

6/6/22: The Cancer Center Called Me

The friendly medical assistant / receptionist who always greets me warmly called me today. She's actually the person I left a message with regarding needing "medical clearance" for my surgery. She wanted to know if I need a new EKG for the "medical clearance", or if my most recent one would suffice. I had no idea!

I realized I have no point person at the hospital where I'll be getting my surgery. I called their main number, explained my situation to the receptionist, and she connected me to the Pre-Admissions Testing person. That person listened patiently and then explained that an EKG performed within the last year is standard procedure when anesthesia will be used in surgery. So, I guess I need another one.

I called the Cancer Center back, and the same medical assistant / receptionist said she'll have the doctor put in an order for an EKG, which can be done at my already-scheduled appointment with the medical oncology NP. I was just glad I don't have to go in for a separate visit.

I found all this a little interesting because I'm pretty sure I did not get an EKG before my double mastectomy surgery. Turns out, there's wide variability in regards to which tests are performed pre-surgery, and many of them may be unnecessary. Since my double mastectomy was performed at a different hospital, I'll just assume the different hospitals have different procedures.

6/3/22: Pre-Operative Phone Call

Mostly this phone call was about reviewing my medical history. The nurse asked me a bunch of yes/no questions about my health.

She gave me a few instructions on where to report and what to expect on the day of surgery. She also said I should expect another phone call the day before surgery with final instructions, like food and drink restrictions. 

Disappointingly, she said no outside masks are allowed in the hospital, so when I check in, I'll be given a new surgical mask. The fact that I will be required to swap out my high-quality KF94 mask for a lower quality surgical mask is unfortunate but not surprising, as I have heard this to be the policy in many, many hospitals. Maybe I should feel lucky that all my other appointments up until now have allowed me to wear a KF94.

Interestingly, she asked if I'll be seeing my doctor before the surgery, because apparently I need "medical clearance". I don't have a PCP appointment scheduled, but I do happen to have a regularly scheduled appointment with my medical oncology NP. She told me to call the NP's office and let them know I'll need "medical clearance" from this appointment. I have no idea what this "medical clearance" is but I just followed instructions and called the Cancer Center and left a message.

Finally, I'm not supposed to take any vitamins for 7 days before surgery. This is not a big deal at all, but I just didn't realize taking vitamins would matter.

6/2/22: The Hospital Called Me

The hospital where I'm getting my BSO (bilateral salpingo-oophorectomy) is not the hospital I usually go to. It's the same hospital network, but a different location a little farther away. It's also not where my OB/GYN surgeon's practice is located, but the hospital she's affiliated with. I feel kind of like I'm driving all over the state. 

Anyway, a super nice person called to set up some appointments. I can't stress enough how much I appreciate people who are nice on the phone, people who are patient and friendly, who speak clearly and don't rush to get through the call as quickly as possible. 

She scheduled a pre-surgery phone call for tomorrow, and a COVID-19 test for a couple days before the surgery. I kind of appreciate the COVID-19 test being done at the hospital, because it'll give me a chance to drive there before the day of surgery, so I'll know the route.

6/2/22: I Checked My Insurance Claims Online

This update has more line items than usual because I kept forgetting to make this post earlier. I'm particularly peeved that there is a "Hospital" charge for my 4/26/22 Medical Oncology NP Phone Appointment, for which I did not even step foot into the hospital.

As usual, these costs are added into the total amount, but there was no out-of-pocket cost to me because we've already met our insurance deductible for the coverage year.

1/6/22: BreastCare NP Appointment: $221.00
1/12/22: OB/GYN Appointment: $315.00
1/12/22: OB/GYN Hospital: $392.00
1/21/22: Lupron (Including Blood Work): $1,858.16
2/2/22: Liver Ultrasound Radiologist: $129.00
2/2/22: Liver Ultrasound Hospital: $557.00
2/8/22: Hepatologist Appointment: $481.00
2/8/22: Hepatologist Hospital (Including Blood Work): $1,131.00
2/18/22: Lupron (Including Blood Work): $930.16
2/18/22: Anastrozole (generic): $545.99
3/10/22: Bone Density Radiologist: $44.00
3/10/22: Bone Density Hospital: $674.00
3/17/22: FibroScan Radiologist: $37.00
3/17/22: FibroScan Hospital: $509.00
3/18/22: Lupron (Including Blood Work): $930.16
4/15/22: Lupron (Including Blood Work): $930.16
4/26/22: Medical Oncology NP Phone Appointment: $260.00
4/26/22: Medical Oncology NP Hospital: $105.00

Total cost to date: $443,019.94
With insurance, cost to me: $10,197.07