1/23/23: New Stretches Helping with Neuropathy in Right Toes

To address the neuropathy (numbness and tingling) in the last two toes on my right foot (which recently started feeling like my sock is wet, but it's not), my oncologist had suggested stretching. 

My OB/GYN and GYN surgeon both seemed to think it's possible that the neuropathy could be related to having had poor body positioning while recovering from BSO surgery. To me, this potential connection to lying down made me think that any "pinched nerve" must be in the area of my hips or back. 

So, I'd been doing full-body stretches, the kind I used to do in dance class growing up. Mostly, these stretches were variations of sitting on the ground with my legs either extended together straight in front of me, or spread out to either side, and elongating my back while bending at my waist and reaching for my toes. Generally speaking, I think stretching can only help, but they didn't seem to help this particular issue.

The other day, out of the blue, it suddenly occured to me to stretch my legs specifically. I started doing the types of stretches I used to do when I was on the track & field and field hockey teams in high school, ones that isolated the calves, quadriceps, and hamstring muscles. To my surprise, these helped! The wet sock feeling is gone, and the neuropathy feels very much reduced in my pinky toe. 

At first I felt a little sheepish that it took so long to make this discovery. But when I thought about it, why should I have known? I'm not a physical therapist! None of my doctors gave me any specific recommendations or directions, so it's not like they knew either. 

Anyway, this is an encouraging development. I'll keep up the stretches and hope for continued improvement, or at least for things to not get worse. 

1/13/23: OB/GYN Appointment

Today's appointment was an annual check-up, but I figured I'd include it in this blog because it's my first time seeing my regular OB/GYN after getting my ovaries out.

First, she reviewed my medical history since the last appointment. She saw the oophorectomy surgery in my medical records, but had not seen the Tamoxifen and hepatology-related stuff, so I caught her up and explained how that led to removing my ovaries. Without knowing that background, I think she at first assumed that my oophorectomy was elective, since we had previously discussed that option.

(It's interesting to me how my different medical providers all seem to gather different information from my records, even though they're all in the same hospital network.) 

After going over everything from last year, she asked if I had any questions. I asked her if she thought the neuropathy in the last 2 toes on my right foot could be a symptom of menopause? At this point, I would describe the sensation most like this: it feels like my sock got wet around those toes, but when I check my sock, it's dry. But it also still feels like the sense of touch is subdued in those toes, similar to how my chemo-induced neuropathy feels in my fingers, as I described to my medical oncologist recently. Anyway, my OB/GYN didn't think it sounded like menopause. She said it's possible it could have resulted from how my body was positioned during recovery from surgery (similar to what my GYN surgeon said), in which case, she said it could still improve, though she did not elaborate on how or why.

(Meanwhile, I Googled the "wet sock" feeling, and was surprised - and somewhat relieved - to find some references. If my toes still feel weird by the time my next PCP appointment rolls around, I might ask about whether or not I should see a neurologist, or maybe even a podiatrist, since the links I found were posted by foot specialists.)  

Anyway, the doctor did a brief breast exam and also looked at my oophorectomy scars, then did the internal exam. She said everything looks fine, I don't need any other follow-up besides my annual check-up. Yay! At this point, she asked me again if I have any more questions; notably, she didn't make any signs of leaving until after I said no. 

I think that's actually what I appreciated most about this appointment, how the doctor asked me multiple times if I had any questions, and how she didn't appear rushed when asking. It really made me feel like she wanted to help me if she could, rather than me feeling like I am monopolizing the doctor's time or being a "difficult" patient by asking questions.

1/9/23: NP Appointment

Today's appointment was my annual check-in with the Breast Center.

I think it took all of 5 minutes! Maybe 8. Definitely not 10.

I was impressed, again, that my NP had read enough of my file to know that I had switched from Tamoxifen to anastrozole. We talked briefly about that, which led me to mention my oophorectomy in June, which she had not seen in my records, for whatever reason. She said she hadn't ever heard of Lupron not working, and I said my oncologist had given me the same impression, since she had called it "a little weird" and couldn't explain it. 

After going over everything that happened last year, she said she hoped everything else is going well. I said yes, other than getting covid over Christmas! I didn't expound upon my covid illness, I just said I'm better now, and optimistic that my medical situation might finally become stable.

She did a clinical breast exam, and said my double mastectomy scars are healing really well, specifically mentioning that the "dog ears" (the extra skin at the outer ends of each scar) look better, i.e., smaller. I said I do think my scars are less bumpy than before, especially around the dog ears, and she said that probably means there's less scar tissue. She asked if I massage the area, because that would help. I said I don't do it on purpose to help the scars, but my underarms still frequently feel numb and tingly and tight (particularly on the right side), so I do now have this funny habit of rubbing the area any time I'm just sitting around watching TV or using the computer. She joked how my kids are probably like, "Oh, that's just mom, rubbing her armpits again!" Haha. Apparently, though, all that rubbing is good for healing, so great!

I was relieved when she said everything looked fine. I wasn't anticipating any problems, but there's always that small part that is fearful of recurrence. 

She said I'll have one more appointment with her in a year, and then that'll be the end of my 5 years of post-diagnosis follow-ups! I honestly can't believe it's almost been 5 years... It sounds like a long time, but it feels too short because so much has happened and I can't believe my surveillance window is close to ending. Again, I didn't ask what happens after that; I suspect they will cut me loose, and I hope that by the time next year rolls around, I'll feel ready for that step.

Throughout the appointment, I think I spoke very matter-of-factly about everything, which perhaps gave the NP the impression that I accept and understand the whole of my situation. I think I do, and I never really considered that that might be unusual. I can't remember her words verbatim now, but the last thing she said to me was something like, "Well, you definitely have a good attitude, and that's, like, 99% of doing better." I'm assuming she used the "99%" number metaphorically, but I was immediately struck by how much that one sentence echoed the message in the book I just read!

(Book Review) Radical Remission: The Nine Key Factors That Can Make a Real Difference: Surviving Cancer Against All Odds by Kelly A. Turner

Here is my 2-star review as posted on Goodreads, followed by some additional thoughts on how I related to the book personally.

This book was mentioned by a friend who was diagnosed with glioblastoma brain cancer. Facing a bleak prognosis, she refused to resign herself to fate and has committed herself to defying the odds. This is not the type of book I usually read, however, when faced with the possibility of imminent death, I can understand the desire to grasp at all possible sources of hope, and I was intrigued.

The premise is fascinating: there are real people whose medically diagnosed cancer disappeared with no known medical reason, so let's study them and try to figure out what happened. Where the book falls short, for me, is how the investigation does not actually look for scientifically supported reasons for recovery, but instead relies almost entirely on each person's opinion on what they think caused their cancer to go away.

First, if you are the kind of person who absolutely never believes in ghosts, don't even try to read this book. There are no ghosts here, but for this book to even be readable, you have to be open to the idea that something might possibly, could be real, even if it defies all reason and there's no scientific explanation. You don't have to buy into alternative medicine, or believe in the paranormal, to get something positive out of this book, but you do need to take everything with a grain of salt.

Now, I am 100% a believer in conventional medicine and science, so I read most of this book with an attitude of, "Wow, that's interesting, not sure I believe all the details, but how amazing that that person is still alive!" The author does not exactly advocate for alternative medicine, in fact, she stated unambiguously that "most people will need conventional medicine to outrun cancer." (p. 9) But right off the bat, in the book's introduction, it's clear that she believes in alternative medicine, since her husband is a traditional Chinese medicine practitioner and studied "an esoteric form of energy healing." (p. 5) When telling the stories of survivors, she gave validity to "[t]he notion that a cancerous tumor is simply a buildup of stuck energy," (p. 94) and she reported matter-of-factly on the various alternative therapies people used, like Reiki or other forms of "energy healing", without any commentary regarding the controversy surrounding those methods.

In fact, it's that lack of transparency that led me to rate this book 2 stars. One of the featured survivors is someone who credits Brazilian John of God for curing his brain tumor. It was a very compelling account, so of course I immediately Googled John of God. Turns out, he's a convicted sex offender! The allegations first surfaced in 2018, and this book was published in 2014, so the author is off the hook for that particular oversight, however, James Randi, known skeptic of paranormal claims, discredited John of God in 2005. I think the complete omission of any reference to documented efforts to expose him as a fraud is downright negligent and detracts from this book's credibility. The author only hinted that John of God may not be legitimate when she wrote that the power of John of God's healing center "could simply be the placebo effect; in other words, our sheer belief that something powerful happens at John of God's center could have caused us to have a deeper meditation experience." (p. 250)

Another thing I wasn't fond of was the author's decision to soften the outlandishness of John of God's healing methods by using carefully chosen words. Though many online articles refer to him succinctly as a "psychic surgeon", the author described John of God as having "the ability to leave his body and go into a trance, thereby allowing the spirit of a higher being to enter his body and perform energetic healing work." (p. 237)

Not all the stories were as off-beat as the one involving John of God, but many of them had alternative medicine elements. Ultimately, I felt conflicted by the personal stories included in each chapter. On the one hand, they were very inspiring and would certainly give hope to a cancer patient with a poor prognosis; on the other hand, all the alternative medicine therapies were beyond belief, if you ask me.

Despite all that, if you can disregard the parts that you find unbelievable, there are valuable insights in this book that would benefit any cancer patient, regardless of prognosis. The nine "key factors" that radical remission patients share all sound very reasonable:

1. Radically Changing Your Diet
2. Taking Control of Your Health
3. Following Your Intuition
4. Using Herbs and Supplements
5. Releasing Suppressed Emotions
6. Increasing Positive Emotions
7. Embracing Social Support
8. Deepening Your Spiritual Connection
9. Having Strong Reasons for Living

Only two items are physically related to your body: changing your diet and taking supplements. While some diets and supplements may be more well-founded than others, at least the author periodically reminded readers to consult their doctors, e.g., "Remember, always speak to your doctor first in case your fast needs to be medically supervised." (p. 28)

If you're like me, you may be surprised that exercise is not on that list. Most health guides lead with diet and exercise, and throughout the book, I kept wondering why exercise was not singled out, especially since it was certainly mentioned in passing, e.g., "Thanks to a combination of yoga, hiking, and walking, [John] now feels like he's in the best shape of his life" (p. 39) and "[Jenny] also continued with the same daily exercise regimen she had created for herself years earlier." (p. 127) It wasn't until the very end of the book (p. 282) that the author revealed that exercise was not included as the 10th key factor because many patients were too weak to exercise when they first turned to alternative therapies, presumably either because of the cancer itself or due to side effects of having tried conventional treatment like chemotherapy. This explanation is fair, but I just wish she had said it up front at the beginning, so I didn't have to spend the entire book wondering why exercise was being glossed over.

The remaining items all fall under mental and emotional health, and even at face value it's easily conceivable that they each would have a positive effect on healing.

Every chapter concluded with actionable items that a person can do to put into practice the concepts outlined in that chapter. These suggestions were generally sensible and doable and essentially just useful advice for maintaining good mental health. In the end, it's these "Actions Steps" that made the book worth the read, in my opinion.

---

Some thoughts on my personal experience:

I was never given a terminal prognosis, so I can't speak to that situation. What I do know is, going through any cancer diagnosis and treatment is difficult, and I don't think anyone doubts that having good mental and emotional health - as supported by the book's "Action Steps" - is beneficial for the healing process.

I did not purposefully employ all the techniques offered in this book, but in retrospect, I think my experience did incorporate some aspects of many of the ideas.

For example, I didn't "radically change my diet", but I did eat more vegetables and less sugar, and I drank more water and less alcohol.

While "taking control of my health" did not mean turning to some kind of alternative therapy, I did do a lot of research on my own, and had strong ideas of what I thought my treatment should look like. I was relieved when the regimen proposed by my oncologist lined up with what I had already read.

I suppose listening to my body - being active when I had some energy, and allowing myself to rest when I felt tired, as advised by my physical therapist - would count as "following my intuition."

I didn't set out to "release suppressed emotions", but I did make a conscious effort to not hold a grudge against anyone who ghosted me during my cancer treatment. (Some people really don't know what to do or say, so they do and say nothing.) Relatedly, I absolutely did "embrace social support" and appreciated those who offered it.

I also did make a concerted effort to "increase positive emotions" by "purposefully making time every day to do something that brought [me] joy" (p. 172), whether it was watching a TV show I like or having a quiet cup of coffee in the sunshine in my backyard.

I won't go through every "key factor", but suffice to say, I did see pieces of my own experience reflected in this book. Were they active components of my recovery that contributed to my healing as much as surgery, chemotherapy, targeted therapy, and hormone therapy? Probably not as much as, but who knows, maybe they did play some role.

1/7/23: I'm Out of Isolation

For the record, I first tested "maybe negative" on Day 11, Thursday, January 5. The thing about rapid tests at the tail end of the illness is that it's hard to have confidence that it's really negative. Sometimes, the line was so faint that I wasn't even sure it was there. (Notably, though, any time I was unsure, my son with presumably better eyesight almost always said he could definitely see a positive line.) 

Another problem was, the window for reading a rapid test is usually 15-30 minutes, but what if the positive line appears after an hour? Does that still count as very mildly infectious, or is it totally invalid?  

That's the kind of inconclusiveness I faced on Day 11. Complicating matters even more, I still had symptoms: congestion and a mild sinus headache. (Interestingly to me, I've rarely had sinus issues when sick in the past, but this bout with covid gave me the worst and longest sinus headache I've ever had.) I just wasn't sure if having symptoms might still make me contagious, even though I tested negative.

From what I can gather, it's not uncommon for acute covid symptoms to last for "a few weeks", but it seems the person is presumed not infectious as long as they are negative on rapid tests. (Lingering symptoms would not be attributed to long covid until at least 4 weeks after infection, or 3 months according to the WHO.)

Still, just to be sure, I followed the strictest guidelines offered by the CDC. At the very, very bottom of their page on isolation, there is a literal "Note" that implies you might still be infectious until you have two sequential negative rapid tests separated by 48 hours. Counting my "maybe negative" on Day 11 as a negative, I got definite negative results on Days 12 and 13 (today), so I ended isolation today.

The congestion and mild sinus headache persist, though, plus I'm still feeling run down and tired, so I plan to take it easy until all symptoms are gone. 

Incidentally, my husband tested "maybe negative" on his Day 12, and by then he was already symptom-free.

1/3/23: I Got Covid (Tested Positive on 12/26/22)

I am not the most covid-cautious person I know, but I am sure that I am the most covid-cautious person other people know. I still do almost all of my socializing outdoors. I do not eat in indoor restaurants, have not attended crowded events like concerts or shows, and my family has never stopped masking indoors with people outside our household. I only go maskless indoors with small groups if everyone is symptom-free and has rapid tested negative, and even then I subscribe to the Swiss Cheese Model of Pandemic Defense (now updated with even more layers), so I also open windows to improve ventilation and run air purifiers to clean the air.

All that to say, my family has made every effort to take "personal responsibility" for our health, as the CDC has repeatedly advised. But since my teacher husband and two kids spend their weekdays in a crowded high school with <5% masking and undisclosed but presumably insufficient indoor air quality, and knowing that one-way masking is not enough when Community Transmission is Substantial or High, it wasn't a complete shock when covid showed up in our family. Still, it's pretty frustrating that my husband got covid despite wearing KF94 masks and being fully vaccinated and up-to-date with boosters. (My husband and kids do occasionally have to unmask to eat lunch indoors, by an open window if possible, when the weather is too wet or cold to eat outdoors.) I suspect we got the new XBB.1.5 variant, which is dominant in our area and appears to be the most transmissible and immune-evasive variant to date. 

The week before the holiday vacation, my husband said he knew of 2-3 students in each of his classes who had contracted covid, which means he was very likely exposed in school. The Friday before vacation, December 23, he felt under the weather, but rapid tested negative. He woke up feeling worse on Saturday (Christmas Eve), tested positive, and isolated immediately in our bedroom, which has an attached bathroom. In retrospect, we should have had him mask and/or isolate starting on Friday just in case, since I probably got covid from sleeping next to him Friday night. 

We cancelled Christmas Eve and Christmas Day plans with my dad, and the kids and I video-chatted my husband into Christmas present-opening on Sunday. I felt fine until that evening; I had a very light scratchiness in my throat, and was especially tired and went to bed early. I rapid tested faintly positive the next morning and joined my husband in isolation. 

Actually, the first thing I did was arrange for us to get PCR tests, for two reasons. First, I have been disgusted at the lack of transparency that has resulted in a massive undercount of covid cases, and I want our cases officially counted, out of principle. Second, if we were to unfortunately develop long covid symptoms, having a PCR test may help with diagnosis and accessing care. We got first available appointments at CVS that Monday morning, though we didn't receive our positive results until Thursday. We also reported our results to makemytestcount.org, an NIH website that tracks rapid test results. 

For both of us, our illnesses started out flu-like (e.g., sore throat, fever, chills, muscle aches), then transitioned to feel like a bad head cold (e.g., excess mucus, congestion), though I additionally have had a persistent sinus headache the whole time, which my husband has not had. I was laid out for a good 5 days, and for about a week was unable to watch TV or read or even use my phone much due to the sinus headache. Our illnesses may be "mild" by covid standards, but I still spent days feeling dreadful, and isolation is incredibly disruptive for the whole family, so still worth avoiding, if you ask me. 

Today is Day 9 for me, Day 11 for my husband. We are both still testing positive on rapid tests, which means likely still contagious. So, we're still isolating.

A few people have asked why we're bothering to isolate after Day 5, since the CDC says we don't have to. Quite simply, we don't want to infect our kids. In addition to carrying a risk of long covid in general, even a mild covid infection can increase a person's risk for diabetes, mental health issues, neurological disorders, cardiovascular disease, erectile dysfunction, possibly even immune dysregulation. I am not yet resigned to inevitable infection, so we're still trying to protect our kids from these potential harms. 

In addition to simply isolating, to minimize the chances of further household transmission, we've also had air purifiers running 24-7, and the unusually warm weather has allowed us to open windows on some days. I also asked the kids to mask as much as possible outside their bedrooms.

The kids have thankfully continued to test negative on rapid tests. They've been real troopers through this whole ordeal. They spent their entire vacation cooped up at home, leaving food at our door, and taking care of our dirty dishes. My father has been an enormous help, too, making three large deliveries of homecooked food for all of us.

My husband and I continue to rest, rest, rest. Hopefully we'll test negative any day now, and hopefully the kids will not get covid at school!