11/10/22: Medical Oncologist Appointment

My oncology appointments are getting more spread out, which is a good thing; fewer problems means fewer appointments. My last appointment was exactly 5 months ago, and my next appointment will be in about 7 months. After that, my oncologist said I can move to yearly appointments, ideally timed in coordination with my yearly breast NP appointments so that I alternate between the Breast Center and oncology every 6 months. My oncology appointments will continue to be scheduled with either my oncologist or oncology NP. I am acutely aware of how I used to feel when going 3 months in between appointments felt "too long", and it's interesting how I'm clearly in a new place now, able to welcome the longer time in between appointments.

But I'm getting ahead of myself.

I arrived 15 minutes early, guessing that I would need time for a blood draw, which I did.

Checking in at the registration desk, I felt a weird sense of sadness when I looked around and recognized nobody. I had gotten so used to seeing familiar faces that seeing no familiar faces at all made me feel kind of lonely. What's more, as I was getting my blood drawn, my old port nurse was in the room, too, but did not recognize me. Granted, I was masked, and back when I used to see her, I always wore a hat to hide my hair loss. Still, I did not say anything to her, for fear that she would still not recognize me even if I reminded her.

Speaking of masks, I'm very glad that medical facilities in my area still require masks, which I know is not the case across the country. Still, I will never understand why, 2 1/2 years into this COVID-19 pandemic, medical facilities continue to provide only surgical masks to staff and patients, knowing that they do not provide sufficient protection against airborne viruses. I was impressed that many, if not most, of the patients I saw were wearing high-quality N95 / KN95 / KF94 masks, though there was one guy who did not wear a mask at all. I think he was the escort for a patient who was wearing a mask, and I don't understand why he was not asked to wear a mask, or denied entry for not wearing a mask.

Anyway, during my blood draw, the phlebotomist had a difficult time filling the tubes. By now I well know the drill of having to drink extra water starting the night before a blood draw, but I just plumb forgot! I felt pretty sheepish about making the phlebotomist's job harder. 

As usual, I got my vitals taken, and was relieved that my blood pressure was fine, since it's given me a little trouble in the past.

I was glad to see my oncologist. I know she's not a friend, but she was a familiar face and has always been supportive. 

I asked if I would be getting an EKG today, and she seemed surprised at the question. I have learned to not hold it against my doctors when they don't know my whole medical file; I figure, they have so many patients, and only a few minutes to review each file before an appointment, so it's okay if they don't remember everything, as long as they think things through after I bring something up. In this case, I reminded her that the cardiologist who did my pre-surgery clearance said I should get an EKG every 6-12 months while on hormone therapy. Once she confirmed that note in my medical file, she went ahead and arranged for an EKG to be done at the end of the appointment.  

We then discussed my concerns. First, I said I'm still feeling the same very mild neuropathy in the first three fingers of both hands, presumably a remnant of chemo. At this point, I mostly ignore it, but it's there.

Then, I told her about various menopause-related side effects, presumably from taking anastrozole and having had my ovaries out. Stiffness in my fingers, hot flashes, and vaginal dryness are not new, and my doctor reminded me that if my side effects start to interfere with my daily living, I don't have to suffer, there are options, including trying another aromatase inhibitor called letrozole. 

I did tell her about a new concern, which is that my thumbs sometimes hurt now. They are stiff like the other fingers, but additionally, whenever I try to grasp or squeeze something (like a bottle), the thumbs hurt and feel weak. Sometimes it's mild and is just an inconvenience, but other times it's more severe, like I end up using both hands to hold a bottle to make sure I don't drop it. My doctor said arthralgia (pain in joints and muscles) is common with anastrozole, but there's always a chance it could be arthritis. Again, it came down to how bothersome the symptom is: if it's very problematic, I could get imaging to rule out or diagnosis arthritis, and/or get physical therapy to help manage the pain, and/or try letrozole and see if side effects improve. Otherwise, I can just monitor it and live with it. At this point, it's not so bad, so I figure I'll just put up with it.

Lastly, I mentioned the mild numbness and tingling in my right foot and leg that has been happening on and off since July. Sometimes it's just in the last 2 toes of my right foot, and it feels similar to the neuropathy in my first 3 fingers. Other times the numbness and tingling extend up my leg to some degree. Because the sensations are always concentrated in the same area, essentially in a line down the outside of my leg, my doctor thinks it's nerve-related, especially since I had a lot of similar nerve-related problems in the past. She suggested I add regular stretching to my daily routine, and see if that helps. 

After all the talking, I changed into a gown (top only) for a physical exam. Everything was fine!  

The doctor then stepped out and a medical assistant came in to do my EKG. She put one lead on each of my calves, one on each of my forearms, and 6 on my torso. She printed out the EKG on the spot and left it on the computer table for my doctor. I took a look and jotted down my QT/QTc numbers: 442/438 ms. Normal QT is 350-450 ms, and normal QTc is 360-460 ms, so it looks like I'm back in the normal range! 

When my oncologist returned to wrap up the appointment, she gave me the business card of the new social worker in the Cancer Center, in case I ever want to talk with her. Apparently, the amazing social worker who helped me through chemo retired.

Back home, I checked my lab results, and my LFTs and estradiol are both within the expected range! Yay! Maybe things are really finally settling down. 

9/24/22: (3 Years Post-DMX) Breast Surgery Scars

It's been over 3 years since my double mastectomy (DMX) surgery. After posting about my BSO scars, I figured I'd circle back and also post about my DMX scars.

To be honest, I don't spend much time worrying about my DMX scars because 1) they aren't visible to others, and 2) I have an "out of sight, out of mind" attitude about them, and I just don't look at them much. I mean, why would I want to? I still have zero regrets about going flat, and I have no interest in getting reconstruction, but I am not exactly happy to be flat. It's still a difficult reminder of having had cancer, and feels like a permanent loss, the cost of getting rid of that cancer. Three years later, and I'm still getting used to it. 

The most notable thing is that my dog ears (extra skin at the outer edges of both incisions, near the armpits) have gotten a lot smaller. They are not totally gone, but the puckering is minimal, and there is only a slight bulge. The flesh under the dog ears used to feel thick and hard, and I used to massage the area frequently. Now I think it must have been scar tissue, because even though I haven't massaged it in a while, the area feels soft, more like just regular skin.  

Around each armpit, there's a broad area - including back muscles behind the underarm, the dog ears, and muscles at the edge of my clavicle - that's still numb and tight. I'm always having to stretch my arms and massage the area, especially on the right side, which had more lymph nodes removed than the left.

I think the scars themselves look good, as far as scars go. The skin is flat and smooth, and the scars are kind of wobbly-looking horizontal lines, just a lighter color than the rest of my skin. Each scar is about 6 inches long and the width varies, but is generally like 1-3 mm. It's still tingly if I touch it. 

Apropos of nothing, but kind of interesting to me, each breast scar is about the same length as my C-section scar. But my C-section scar is dark, rather than light, and it's a very thin, straight line all the way across, no real width or wobbliness to it like my breast scars. 

9/20/22: BSO Incisions Fully Healed

I haven't been diligently tracking my oophorectomy scars, but every now and then I'd feel the left incision area and confirm there was still a little bump under the skin. It did appear to be getting smaller, so I haven't really worried about it.

This morning, I randomly checked the left incision and it feels practically normal! There is a permanent "shelf" at the left incision site, though. And both the left and right scars are still quite dark. But honestly, as long as they are medically healed, I don't really care how they look, since - unlike my port scar - they aren't visible to anyone but me. 

8/24/22: Hepatology Appointment

I dare say today's phone appointment was a pleasant conversation!

The doctor carefully reviewed the up-and-down trend of my LFT results over the past year. He said my current results are "completely normal" and indicate normal liver function!

I asked if that means I no longer have fatty liver disease? He said yes, given my BMI and LFTs, I can say I do not have fatty liver disease. 

I know by now that doctors never order tests to confirm normal results, but I figured I'd ask anyway if I should get another FibroScan. He said sometimes, imaging results are "consistent" with fatty liver, but when a biopsy is performed, there's no fat. The FibroScan also looks for scarring, and the important thing is that my prior FibroScan showed little to no scarring. Since everything now points to normal liver function, there's no need for a FibroScan. 

I was impressed that the doctor spent a surprising amount of time reviewing my hormone therapy regimen, even asking about my ovary removal and side effects. I told him that my side effects on anastrozole (mostly just joint stiffness in my fingers, since other symptoms like hot flashes and vaginal dryness can be attributed to menopause) are worse than when on Tamoxifen, but better than when I was on exemestane, and I consider them manageable. He emphasized the importance of finding the right balance between treatment and side effects; he didn't say it outright (presumably because these medications are squarely in my oncologist's domain) but it's clear to me that since Tamoxifen was the probable culprit leading to my liver problems, I'm unlikely to have a recurrence of fatty liver as long as I can withstand the side effects of other medications and stay off Tamoxifen. 

I had one final question about whether or not to worry about my ferritin number still being a little elevated. Because my ferritin was very high (538) around the same time my LFTs were high, and it has since decreased to only being a little high (202), the doctor said it's likely related to the fatty liver, and he's "not concerned".

I'll have one final follow-up in 6 months just to make sure everything is still normal.

8/24/22: Cancerversary

Actually, the 3-year anniversary of my double mastectomy was yesterday. Maybe it's kind of a good thing that I forgot and didn't realize the significance of the date until today, because it implies that the experience marked by the date is not occupying a huge place in my psyche?

Interestingly, to me, it feels like I've been managing my cancer treatment forever, so "3 years" sounds like a surprisingly short period of time. On the other hand, when I focus on just those words - "3 years" - then it strikes me as a long time. It's weird how time, something that is objectively measured, can feel so subjective. 

I also realized I haven't posted any photos in a while, so here are a few new ones.

This is me now.

I never did go back to wearing contacts after stopping during chemo, so I wear glasses all the time now.

I haven't cut my hair since I shaved it. I'm thrilled that it's grown back as thick and as black as before, especially because I know that for some people, post-chemo hair can grow back white or gray, or with a different texture. The top is still a bit thinner than it used to be, but it's the kind of thing that maybe only I can notice, so I try not to let it detract from the gratitude of having a full head of hair again.  

I like that it's long enough to help camouflage my flatness, but truth be told, probably 98% of the time my hair is up in a messy bun because of the heat of hot flashes. Since getting my ovaries out, the hot flashes have been stronger and more frequent. It finally dawned on me that maybe this is why so many women cut their hair short as they get older! 

Anyway, here are a couple photos of my port scar. 

I can't remember exactly when I stopped using the scar cream every night, but for months now I've been applying it maybe 3 or 4 times a week. At this point, I figure I'll just finish the tube and be done with it. When I first took these photos, I didn't think the scar looked any better, but when I compared them to my last photos from over a year ago, it does look better. Maybe the scar cream helped, or maybe it's just the passage of time. Who knows!

8/17/22: Blood Draw and LFT Results

I was originally supposed to have an in-person appointment with my hepatologist this week, but the doctor's office called last week and asked if I wanted to change it to a telehealth appointment next week (presumably due to the current Delta-level plateau in COVID-19 cases in my state). From what I remember of my first hepatology appointment, an actual physical exam didn't seem critical, so I agreed to a phone appointment. (They also offered a video option, but I'm more comfortable on the phone.)

The office said the doctor would put in a lab order, so I should get my blood drawn the week before (this week), and the results would be ready in time to be discussed at my appointment. They asked which location I wanted to go to for the blood draw, which I appreciated because the hepatologist's office isn't the most convenient site for me.

Earlier this week, before making the drive to get my blood drawn, I decided to call the lab to confirm that the orders were ready. My penchant for double-checking everything paid off, because the lab had no orders for me! I had to call the hepatologist's office and tell them my expected lab orders weren't ready, and then follow up with the lab again later.

So I got my blood drawn yesterday, and then got an email late last night saying the results were available online. Interestingly, because I got my blood drawn at my usual satellite hospital's regular lab - and not the Cancer Center lab which is affiliated with the main hospital - the results aren't in the online patient portal that I usually use. Even though all my doctors are in the same hospital network, I have to use 3 separate web sites, each with its own account, to access my records: one for the main hospital, one for satellite hospitals, and one for my PCP. Yep, it's confusing.

Anyway. My liver function tests look good!! Here's a history of all my results, including the hormone therapy pill I was taking at the time. The first number is ALT, the second number is AST. The red numbers are out of range and indicative of non-alcoholic fatty liver disease.

08/16/22 26 22 Anastrozole

08/08/22 26 26 Anastrozole

06/10/22   46 34 Anastrozole

05/13/22   57   41 Anastrozole

04/15/22   78   56 Anastrozole

03/18/22   86   63 Anastrozole

02/18/22   79   65 Tamoxifen

02/08/22   74   51 Tamoxifen

01/21/22   62   53 Tamoxifen

12/23/21   65   49 Tamoxifen

06/10/21 25 22 Tamoxifen

12/23/20 18 18 Exemestane

So the main questions I'll have for my hepatologist are: Does having ALT and AST values within normal range automatically mean that my liver is no longer fatty? Getting a FibroScan is what actually confirmed how fatty my liver was, so will I get another FibroScan to confirm improvement?

8/8/22: I Checked My Insurance Claims Online

This list covers all my cancer-related medical costs through the end of June. Since we already met our insurance deductible for the coverage year, the only costs to us were the co-pays on my BSO surgery-related prescriptions.

Surprisingly, while compiling these numbers, I noticed right away that my Lupron injection in June cost a whole lot more than usual. The cost of Lupron has varied over the months and years, but generally has always been less than $1,000. Suddenly, this June, the price of one injection was over $5,000! I have no idea why.

Our insurance coverage year starts on July 1, which means our $4,000 deductible will be reset. So the next time I post a cost update, I'll have more out-of-pocket expenses to report.

4/29/22: GYN Surgeon Appointment: $608.00
5/10/22: Pelvic Ultrasound Radiologist: $839.00
5/10/22: Anastrozole (generic): $545.99
5/13/22: Lupron (Including Blood Work): $930.16
6/10/22: Medical Oncology NP & EKG Hospital + Lupron (Including Blood Work): $7,085.80
6/10/22: Medical Oncology NP Appointment: $326.00
6/10/22: Cardiologist EKG: $27.00
6/13/22: PCP Appointment + EKG: $385.00
6/14/22: COVID-19 Test: $375.00
6/14/22: Cardiologist & EKG Hospital: $227.00
6/14/22: Cardiologist Appointment: $481.00
6/14/22: Cardiologist EKG: $27.00
6/16/22: BSO Surgery Hospital: $1,627.88
6/16/22: BSO Sugery Surgeon: $2,167.00
6/16/22: BSO Surgery Anesthesiologist: $1,820.00
6/16/22: BSO Surgery Pathologist: $274.00
6/16/22: Prescription Ibuprofen: $15.49 (out-of-pocket co-pay: $2.57)
6/16/22: Prescription Docusate Sodium "Colace": $6.98 (not covered by insurance, out-of-pocket cost: $6.98)
6/16/22: Prescription Oxycodone (didn't use): $11.99 (out-of-pocket co-pay: $1.07)

Total cost to date: $460,800.23
With insurance, cost to me: $10,207.69

8/8/22: PCP Appointment

Today I had my annual physical with my PCP. There was nothing noteworthy about it in terms of my own health, but she did say something that I wanted to write down for the record. 

She asked how old my daughter is, and though it's too early now to be thinking about it, she said my daughter should start getting mammograms when she is 10 years younger than I was when I got breast cancer. Back at home, a Google search returned one result that said screening should start 5 years before the earliest age of diagnosis of a family member, and another result that listed various guidelines based on a number of different risk factors, including a recommendation for the 10-year rule for certain situations. My PCP tends to always err on the side of caution, so I'm not surprised her guidance falls more on the conservative side.

Technically I was diagnosed at age 43, but I found the first lump at age 42. Using that number, that means my daughter should talk to her doctor about getting mammograms as early as age 32. She's literally only half that age now - and who knows how much medicine will change in the next decade and a half - so it's nothing she needs to be burdened with at this time, but certainly something I should keep tucked into the back corner of my mind. 

7/12/22: (3.5 Weeks Post-BSO) GYN Surgeon Appointment

Today was my scheduled post-surgery follow-up with the GYN surgeon.

Thankfully, all the bruises have been noticeably improving, so that was one less thing I was worried about going into this appointment. 

The right incision is healing almost perfectly, there is just a very small bump underneath. I think it's scar tissue. The doctor was unconcerned and said she thinks it'll go away on its own.

The bigger lump of scar tissue under the left incision is still there. The doctor said to Google "C-section massage" and apply the same techniques. The incision area isn't swollen anymore, but it's still puckered - the doctor used the word dimpled - and she said it can take up to 4 months for everything to settle down. (I appreciate having my expectations set appropriately.) She said she thinks it will eventually look normal, but it's possible the incision will create like a "shelf" (or "pooch"), which is exactly what has happened with my C-section scar. Unlike the blog entry I just linked, I don't mind it, I hardly ever think of it, and it doesn't bother me. So, on the one hand, I'm used to my C-section scar, and it's fine if the left incision heals similarly; on the other hand, the right incision already looks basically normal, so it'll be a shame if the left incision doesn't heal the same way.  

Finally, the doctor said there was nothing concerning in my pathology report, and it's okay to sleep on my belly now.

After she assured me everything surgery-related was fine, I told her about an unusual symptom I've been having, which is that my right leg started to feel numb last Friday. It's a very mild numbness, like the neuropathy in my first three fingers on both hands (which is a lingering side effect from chemo). I feel it most in the 4th and pinky toes on my right foot, but sometimes my whole right foot feels a little numb and tingly, sometimes it's in my right calf, sometimes through the knee, and sometimes all the way up my leg to my right hip. 

The doctor said any surgery-related numbness would have occurred immediately after surgery, so this one popping up 3 weeks later means it's not because of the surgery directly. I remembered that I had some bizarre, unexplained numbness in my hands after breast surgery and chemo, and at one point I thought that maybe sleeping on my back all the time was pinching my nerves, because sleeping on my side seemed to help. This time, though, I have been sleeping on my side a lot. The doctor said it's possible that might be the problem; sleeping on my left side might be stretching the nerves of my right leg. She suggested placing a pillow between my legs when sleeping on my side, or changing my sleep position. She didn't seem worried, and I guess I'll just follow up with my PCP or oncologist if it persists.

Meanwhile, I also remembered that my physical therapist used to talk a lot about "getting the lymph flowing". At the time she recommended the Instagram account of a physical therapist who specializes in oncology. I like this account a lot and still follow it, so I looked up some lower body exercises for the lymphatic system. I figure it can't hurt to do them.

7/4/22: (18 Days Post-BSO) I'm Okay

The giant bruise near the left incision continues to get noticeably better, which is reassuring. 

The left incision area, however, is still a little swollen and tender. I've been taking ibuprofen just to help with the inflammation, and I keep wondering when I should stop.

I've noticed "new" bruising below my bellybutton. It's not really new because my doctor saw the area was bruised at my incision check appointment, but at the time I couldn't really see it. Now it's in the stage where, as it gets better, the color has spread and changed to light purple, green, and yellow. 

The pubic bruise is still kind of a mystery to me. It hasn't changed very noticeably; maybe it looks lighter and less defined? It still doesn't hurt or feel swollen to me. 

I can walk almost normally now, but it still helps to support my left incision when going up and down stairs, and if I'm trying to walk at a completely normal pace. I've resumed most of my usual household activities (except daily cooking), but I also feel I need to properly rest after exerting myself. It's not clear to me if I should still be icing the swollen and bruised areas, but I'll do it every now and then when I'm in rest mode.

Incidentally, I'm getting hot flashes again. It's an interesting observation, suggesting that my body really did have a not insignificant amount of estrogen, so that removing that amount clearly made a difference. 

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

5/30/22: My Medical Oncology NP Messaged Me

Actually, I messaged her first.

I sent her a message on Friday via the online patient portal because I had some spotting. Normally, this unexpected spotting would be somewhat alarming, and the last time this happened is when I went down the Tamoxifen detour. 

None of us has a crystal ball, so who could have known that the Tamoxifen would end up causing non-alcoholic fatty liver disease. Still, looking back at my blog entries, it's clear I didn't want an oophorectomy due to the risks, so Tamoxifen absolutely made sense at the time. 

I guess all the risks still exist, but I don't really have a choice now.

Anyway, as I mentioned to my NP in my message, I figured the spotting wasn't too alarming this time because we already know the Lupron isn't fully working and I'm already scheduled for an oophorectomy, but I decided to report the symptom anyway since I haven't actually had the surgery yet. 

So today the NP responded, expressed sympathy for ongoing complications, and said she'd let my OB/GYN surgeon know.

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

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

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

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

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

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

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

5/11/22: Pelvic Ultrasound, Results, and Some Pre-Surgery Instructions

Yesterday I had the pelvic ultrasound to make sure there's nothing unusual about my ovaries that would complicate my BSO surgery. 

Like last time, I was told to drink water before my appointment to make sure I had a full bladder. The person I spoke with recommended 2 bottles of water, but that's an awful lot of water for me, so I again did some trial runs with 24 oz., the amount recommended last time. I couldn't do it. I kept having to pee. On the day of my appointment, I drank only 12 oz., like last time.

My bladder was plenty full for the first part of the procedure, when they pushed the probe around on my abdomen. It was pretty uncomfortable, I had to consciously hold in the pee! I was allowed to use the bathroom before the internal part of the procedure, which was a lot more uncomfortable than I remembered from last time. 

Anyway, I checked online today and was surprised to see my results available already. I couldn't understand most of the report, but it did say, "Bilateral ovaries are within normal limits." A little bit later, I got a friendly phone call from the OB/GYN's office letting me know the results were fine.

I mentioned that the doctor had told me to expect a phone call with pre-surgery instructions, but I hadn't received any call yet. She said she'd check in with the surgery coordinator.

I have to say, I'm impressed with how responsive this office has been. The surgery coordinator promptly sent me an email confirming my surgery date and providing pre-surgery showering instructions. The instructions said to use Hibiclens, but since I had an allergic reaction to chlorhexidine when I got my port installed, I called up the surgery coordinator to ask about it. She said I should just use any antibacterial soap. It occurs to me that I did shower with Hibiclens for my double mastectomy surgery, and I didn't have an allergic reaction then, but I figure it's better to be safe than sorry, so I'll just steer clear of it.   

I also asked about the pre-surgery covid testing requirements, which weren't in the email. She said the hospital will call me closer to the surgery date to give me more instructions, including when and where to get tested before the surgery. My area is in another covid surge - right now my state has Delta-level case numbers, and the kids' school district has more daily cases than our Omicron peak! - so I'll need to be even more cautious to make sure I don't get infected before my surgery. 

4/29/22: Oophorectomy Surgery Consultation Appointment

I will never take for granted having medical providers I like and trust. My OB/GYN surgeon inspired confidence and was super friendly.

First off, the procedure I'll be getting isn't just an oophorectomy, it's called a bilateral salpingo-oophorectomy (BSO). "Salpingo" means "relating to fallopian tubes". Apparently, fallopian tubes serve no purpose without ovaries, plus many ovarian cancers may actually originate in the fallopian tubes, so it just makes sense to also remove fallopian tubes when removing ovaries.

It will be laparoscopic, with 3 entry points. (I found this part fascinating.) One will be through my bellybutton, and the other two will be 0.5 cm incisions towards the outer edges of my hip. I'll get general anesthesia, and the procedure itself should take about an hour. She already scheduled the surgery for June 16th, and I'll have a follow-up appointment 3-4 weeks after that. I'll have typical post-surgery restrictions (e.g., no heavy lifting) for 2 weeks afterwards, and she said full recovery should be "a few weeks".

Before the surgery, I'll need a pelvic ultrasound so the doctor can confirm that the surgery can be done laparoscopically. I'll also need a covid test, which the doctor said will be done at the hospital a couple days beforehand. The hospital for this surgery will not be my usual hospital location, and also not the new OB/GYN office location, but another satellite hospital location. A bit more of a drive, but still better than driving into the city. 

After the surgery, I'll be in surgically-induced menopause, which can sometimes lead to more severe menopause symptoms because the loss of estrogen is more drastic than when the ovaries gradually shut down naturally. But, since I've already been on Lupron for so long, and my body has already experienced chemically-induced menopause, the doctor says my menopause-related symptoms shouldn't be too bad compared with what I already have now. I may have new or worse symptoms for a few months, but hopefully they will only be temporary. 

My estradiol will continue to be monitored, at least for a while, to make sure it's <5 as expected. 

I'm assuming I'll just continue with anastrozole, but I'm not sure, I'll have to ask my oncologist about it.

After all this, it occurs to me that if I had gotten my ovaries out earlier, I would never have been put on Tamoxifen (which is only for premenopausal women), and I never would have gotten non-alcoholic fatty liver disease. That's a whole extra medical condition that puts me at high risk for covid! Oh, well. Could not have been predicted.