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30 November 2017
29 November 2017
27 November 2017
25 November 2017
01 November 2017
I feel as though I've just given birth...
I feel as though I've just given birth but, as I'm 100% biological male, I know that's an impossibility in our reality.
I've had this feeling on a near-daily basis for the past twelve months. I feel as though my normal life has become amplified, like how a headache amplifies into a migraine. That is to say, I've been taking care of my mother, who on top of her ongoing health issues was diagnosed with her fourth round of breast cancer at the beginning of last November, supporting my sister with her four daughters (the eldest of whom I've previously written about is very special needs), helping my father (who's recently moved back to the area) launch a new business, and once in a while squeeze in an appointment or two for my own health needs that are ever-growing in this cosmic journey we're all in together as we swirl around through space on a water-covered rock orbiting around a giant blob of hydrogen and helium entwined in a fusion reaction we call the sun that we label growing older (which I'll be writing about in another article).
In other words, I'm a family caregiver. And I know that there are lots of other caregivers out there but it seems that over the past twelve months, my caregiving duties and responsibilities have been a bit overwhelming. It wasn't this difficult the last time my mother had cancer, and it certainly hasn't been this difficult in caring for my mother and other family members over the past few years while her cancer has been in remission. And there have been a number of reasons for that.
Before I get into it though, I'd like to explain some of the reasons behind my writing these personal update type articles now, rather than respond to people's questions at a later date.
First and foremost, I do not write these types of articles to elicit pity or sympathy from anyone. I'm not looking for an outpouring of "you poor thing" or "boo hoos." In fact, I'd much rather avoid those types of responses. Thankfully, my articles haven't generated such expressions of commiseration from my readers.
Rather, the primary reason I write about my personal life is to update quite a few of my friends and followers who are interested in and care about my life's journey. Over the years, I've made quite a few friends, and I'm grateful and thankful for each and every connection I have made. I cherish the conversations and interactions with my friends online. And when it comes to online relationships, I view them more in the mindset of a millennial; I don't really differentiate between online and "real" (or offline) people. But that, again, is another article.
When I began sharing parts of my life online (quite some time ago), I found it to be cathartic. And then I had people reach out and thank me for sharing my stories, for it gave them hope—hope that despite all of my struggles, I'm still here, so perhaps they could make it, too. And perhaps that, above all else, is what propels me to continue sharing the intimate and personal details of my life.
For those who have been paying attention, I hadn't written anything in nearly a year—from my post about celebrating my 29th birthday last October to a series of posts I wrote this year regarding an election that caught my attention in The Bronx. Although that's not entirely true; I've actually been writing this article since around February of this year. I just haven't been able to finish it.
After the election was stolen from Bernie Sanders last year (with New York City recently admitting it wrongfully purged its voter rolls in the 2016 presidential primary elections), I became even more disheartened than I was before I decided to get back into politics. My depression grew exponentially, as did my despair. I knew what was to come: I and many other Bernie supporters predicted in social media posts: a Trump presidency, which would be only slightly better than a Clinton one in that we wouldn't be rushing off to war in the Middle East or elsewhere around the world. And so far, that prediction also has held true. While we may seem to be forever on the precipice of war, we have not gone over that precipice—something that would have happened with a Clinton presidency, for certain.
And then there was the general election, after the primaries. I couldn't support either of the major party candidates. It was brutal, to say the least. Friends, some of whom I'd known in real life for years, deserted me. Discussions online became tenuous, at best. The air was permeated by tension. Forget about walking on eggshells, this was an era of connecting grains of sand together and stepping only on those interconnected grains.
My saving grace (in more ways than one) was having found Hartford Capital City Pride (HCCP), an LGBTQ Pride organization in Hartford, CT, where mum lives. So I put some effort into that. But their pride celebrations took place in September, and afterwards there was a bit of a lull. Besides, being the diva that I am, I had to make my exit from their pride event last year by having an ambulance enter into the middle of the entire event and whisk me away to hospital, where I was admitted and spent a good five or so days, inpatient.
Up until this point I had been used to splitting my time between NY and CT. While I continued to do so until the holidays, it was clear that I needed to spend an extended amount of time in CT without returning to NY. Mum began complaining about painful lumps under her left arm. We made an appointment with her oncologist. Tests were ordered. The cancer was back. And the tumors were big, as in centimeters (denote the "s") big.
Since this wonderful news came in around the holidays, I decided to go home and gather a few months' worth of clothes, prepared to return for an extended stay. Little did I know at the time just how extended my stay was going to be. I returned to CT in time to celebrate the holidays with mum and then began making appointments to see as many of her (at the time) 18 doctors as necessary to figure out what to do to combat her fourth round of breast cancer.
By now, we knew that she has one of the breast cancer genes (she's ER+ PR+ HER2- BRCA1+). After consultation with a number of specialists, including her oncologist hematologist, the plan was to begin treating the cancer with chemotherapy-like hormonal treatments. These pills come with fairly severe side effects, although perhaps not quite as severe as intravenously-given chemotherapy treatment.
Some of mum's other health issues (hence the12 15 18 or so doctors she has) include mental health issues, which can make it difficult to provide assistance and needed and appropriate care for her. For instance, I found the best knee specialist in the area, who recommended a total knee replacement of the left knee and arthroscopic surgery of the right knee. That was four years ago. Now, she probably needs both knees to be replaced. Because of her anxiety, she still refuses to have any surgeries. However, she doesn't believe entering into therapeutic or psychiatric care will do anything to help her, so she refuses.
Why then, you might be asking yourself, would I put myself through the wringer, when I have my own issues to deal with? Well, it all goes back to my paternal grandmother's death.
When my paternal grandmother (dad's parents, who raised my sister and me from the age of 3 when dad and mom divorced) died, I wasn't there for her. I don't blame myself for not being there because I was in hospital at the time (for pretty much an entire year healing from my car accident), so it wasn't really possible for me to be there.
However, I also know that I might have been able to prevent her death, or at least been there for her. And I know that I just contradicted myself, but not entirely. I highly suspect that the nursing home where Grams was staying to recover from a broken hip royally screwed up in their care for her because my sister-in-law (a trained medical professional) told me that she witnessed the staff dropping her in bed on multiple occasions while turning Grams to prevent bed sores. Had I been there, I probably would have noticed that or other things. And trust me, I would have raised holy hell if medical staff were mistreating Grams, much in the same way I did when medical staff were not treating my eldest niece, Jennal, as well as they should have been.
So I promised myself, if anyone else in my family got into a situation where they were sick, I would do everything I could to be there for them, and ensure they received proper medical care. And if not, to raise holy hell. I only found out what the nursing home did long after Grams died, and Gramps didn't wanna sue, he saw no point in it. Ugh.
The next "blow" came shortly after receiving mom's diagnosis: Two days before Christmas, Twitter permanently suspended my account:
There are two important things to know about me: 1) Twitter is one of my primary social outlets (as well as social networks) and means of connecting with people, and 2) I abhor violence. Needless to say, receiving a notice from Twitter two days before Christmas that my @NiteStar account, which I had carefully curated to within the top 0.1% (or higher) of all Twitter users over quite a number of years, had been permanently shut down, sent my depression into a dovetail. (After a very long struggle, I eventually got my account back around April but my ranking has suffered and I haven't had the time/energy to bring it back up.) But I digress, Twitter account suspension could be an entirely separate article.
But I hadn't been able to get back home to New York, not so much because they've been screwing up her care up here but because things are pretty complicated. Mum is from a so-called third world Asian country, Thailand. She only advanced to a fourth grade education there because the government only paid for four grades at the time (after that, families had to pay and her family couldn't afford the private school fees). As such, mum doesn't understand a lot of what the docs and other medical folks are talking about with her.
Hell, most native-English speaking Americans don't understand what doctors tell them, especially when dealing with complex medical issues like cancer. Add to that her fear of having surgery that's prevented her from having both of her knees replaced (no matter how many doctors tell her it'll make her feel better and no matter how many reassurances we give her, etc.).
Add in her mental health issues like crippling anxiety and panic disorders with cyclothymia, some personality disorders, and OCD, all of which cause memory issues resembling dementia, these further exacerbate dealing with all of mum's other medical issues. To make matters worse, she refuses to accept that treating her mental health issues will make any difference and thus refuses to see a therapist or psychiatrist (her PCP prescribes a few meds that she's been taking for a while).
It doesn't help that I'm dealing with 20 other doctors for her, too. All of these matters make it loads of fun for the whole family because we all know how doctors just love to talk to one another and keep abreast on each other's work regarding their patients. But seriously, it often feels like they always expect you, the patient, to know and keep track of what's going on because while they're supposed to read the reports they send one another over the computer, they never seem to have the time to do that. In all honesty, though, I usually have 3,000 unread emails sitting in my Inbox at any given time, so I can sympathize. But we're talking about people's lives here!. Worst of all, though, is that they never can find those reports when you're sitting there in the exam room.
With mum's language barrier issues, her lack of a formal first-world education, her 21 doctors, and 40-plus medications (I did mention that she takes38 42 45 46 prescription medications, right?), I shudder to think at how her medical care would have been handled had I not been here to help her get through this. I've been helping her for the past seven or eight years or so. With my knack for utilizing technology, advanced educational background, and "better" upbringing, I'm in a better position than even most of the professional caregivers assigned to provide care for mom.
Mum's doctors often recognize and thank me for being there for her, and for helping them. They recognize that mum is getting better care with me taking her to all of her appointments than had I not been there. And they recognize that they can do their jobs better because I am providing them with all of the information they need to do their jobs, on hand, that they may not readily have on hand or that patients may at times be reluctant to provide. And yes, mum does occasionally become angry with me when I provide what she deems to be too much information to the doctors; however, I know that without that information, they can't do their jobs properly. It's a double-edged sword that comes with mixed emotions.
Additionally, I know how to research what the doctors are saying. Often, I can do that in real-time during the appointments, as they're speaking, on one of the mobile devices that I'm usually toting around with me. I'm able to ask pertinent questions, including inquiring about different treatments, alternative therapies, etc. I would posit that most individuals aren't as proactive with even their own medical care, and most doctors don't give their patients the time to ask questions or mull things over.
And yes, I also do the same during my own medical appointments, of which I've been having more than my fair share, much to my own chagrin. Those appointments have thus far discovered vestibular migraine headaches, a BMI far too high for anyone's (including my own) liking, COPD (which is the result of having grown up in a 3-pack-a-day smoker's household (I never smoked), being morbidly obese, and having asthma), confirmation via triple MRI of severe injuries to my back that is the source of very bad back pains, calcification (deposits?) in my brain, palpitations, elevated blood pressure (but not enough for a diagnosis of hypertension), some dermatological issues including dermatographia, some new allergies, and a few other sordid issues that we haven't addressed and probably a bunch more that we have yet to uncover. 😛
So I started 2017 on a very down note. No Twitter, mom's recurrence of cancer, I had been hospitalized and my physical health issues seemingly doubled (tripled) overnight, it looked like I'd be spending an extended period of time in CT under very stressful conditions, and I was getting an amazing 0.3% raise in my Social Security Disability Income (this amounted to a whopping $4/month!). Just for starters.
As we began mum on the hormonal chemo treatment, her anxiety ran through the roof. Panic attacks became a daily part of life, and cyclothymia blossomed into full-blown bipolar. Her stomach pains were worsening, so she was sent to an oncological surgeon (number of doctors:22 23), who recommended her gallbladder be removed to prevent possibility of infection, which could result in death given that her hormonal drug treatment (Ibrance/Letrozole) has immunosuppressive properties. Rather than wait for an emergency situation, mum was taken off the Ibrance for four weeks in order to allow the surgery in a controlled manner; however, this allowed her tumors to grow exponentially.
With the Ibrance less effective than before, she was switched to a second treatment (Afinitor/Exemestane) and eventually sent to a radiation oncologist (number of doctors: now 24). Mum went through 28 days of daily radiation (15 minutes of radiation treatment) in May, which brought down the size of some of the bigger tumors but caused severe type 2 radiation burns that took months to heal (more than twice the expected healing time, due in part because of mom's aforementioned difficulties). On top of this, side effects from the radiation treatment and Afinitor caused a 40-pound weight loss, leaving her very weakened.
All of the combined effects led mum to her first-ever overnight hospitalization stay, which she spent at Hartford Hospital. There were a number of issues that took place there (which deserve their own article). Mum's overnight stay lasted for just over two weeks, on five different units. She was seen by a number of specialists. When they finally stabilized her, she was discharged to Avery Heights for rehab, in order to regain her strength. A month after that, she returned home with in-home care.
At the same time mum went in hospital, I received devastating news from my sister, Jennifer. In short, Jennifer discovered that someone she'd let into her life was, essentially, taking advantage of my eldest niece, Jennal. This triggered a hormonal response inducing early puberty due to these forced premature relations. The even greater problem with this is that, according to Jennal's pediatric neurologists, this was a direct cause of Jennal's seizures to return, once again putting her life in grave jeopardy.
After Jennal's hemispherectomy (which I strongly urge you to read about), she had become relatively seizure-free with appropriate anti-seizure medications. However, she now has seizures whenever she gets her period or becomes stressed, gets upset, etc. Additionally, Jennal, who is very special needs with severe epilepsy, cerebral palsy, and multiple learning disabilities (among other ailments) has been brainwashed by this predatory monster into believing a deranged and psychotic version of reality: that this abominable creature of some 40-plus odd years of existence on our planet was in a "loving relationship" with Jennal, an 11 year old child.
I cannot write any more about this than I have due to the pending criminal case, except to question why Westchester County District Attorney Anthony A. Scarpino Jr. and his office aren't charging the vile manifestation of evil that committed these unspeakable acts against Jennal with more serious felony charges, such as multiple counts of Rape in the First Degree, for which the facts certainly fit the statute, New York Penal Law, Article 130, S 130.35. This way, the dastardly fiend would, upon conviction, be able to be sentenced to multiple, consecutive terms of 20-25 years imprisonment, thus guaranteeing they would never, ever, ev-ah see or smell the fresh air and light of freedom in their life again, even for one quintillionth of one millisecond.
I very much question DA Scarpino's decision in charging the grand jury with the crimes presented. Like most New York district attorneys, they're playing it safe, instead of fighting for justice on behalf of the victims of serious and heinous crimes. Politics has turned district attorneys offices all over the State of New York (and perhaps the nation) into prostrated statisticians who care more about conviction rates than meting out justice. If Hon. Jeanine Ferris Pirro were still the district attorney for Westchester, I don't think she, being such a victim's advocate, would have been so lenient in seeking an indictment from the grand jury. But I digress, this is another article for another time...
As I see the reality of what has happened to my niece grow on her (we video chat), and feel it even more when we visit, my heart sinks further and further. How do I help her? How do I heal her? How can I make it all better for her? How can I make her understand what's happened? Is Jennal even developmentally ready to be able to cope with understanding what's happened to her, or even be able to understand what's happened to her? This last part is slowly, very slowly starting to sink in, as each day crawls by in her mind.
How I wish I had a magic wand I could wave over Jennal to heal the wounds so deeply inflicted upon her. Anyone who meets Jennal would know instantly how much love and joy she has for the world and all things in it. They would question how anyone, how any living person or creature could even think about harming her in any way, least of all by the most vile, personal, and intimate way in which she was so horrendously assaulted in body, mind, and spirit, over the course of more than one year.
I spent the summer attempting to assist and coordinate mom's ever-changing care, in hospital, rehab, and home, assist my father in setting up a new financial consulting business now that he's moved back to the area, deal with the complete clusterfuck of the news my sister uncovered, aid my sister in keeping her family safe until the perpetrator was caught by law enforcement, provide support to my sister, my mother, my brothers, and my father, all whilst attempting to keep to my own medical appointments, and somehow maintain what little sanity I still possessed.
And to top it all off, in the broiling heat of August, I was evicted from my home in New York. Essentially, I hadn't been able to get to my apartment to take care of it. I asked my roommate to do certain things so I could AirB&B my bedroom to be able to pay the rent, as I was staying in CT. And I guess he didn't feel comfortable doing them without my physically being there, so that never got done. I no longer was in a rental assistance program as of the beginning of the year (that's another story for another time), and the full rent wasn't being paid (I don't have $1,000/month for rent).
I couldn't even break away to return to New York during the eviction proceedings because they took place right when mum went in hospital. As such, I was evicted from my apartment, and had to run down to New York on the last weekend in August in order to gather my belongings and shuttle them up and throw them into an overpriced storage unit. I used U-Haul to make the move, and I had terrible experiences with them. I had a friend rent a truck, and I reserved a storage unit for whatever of my belongings I could rescue from my apartment.
I had major problems with both the truck, as well as the storage unit. But I haven't had the time/energy/strength to (a) find another, more affordable storage facility and (b) move my belongings to such a facility. As such, my belongings from New York remain in U-Haul's speciously- and over-priced storage facility down the street here in Hartford.
So during mum's hospitalization, I was dealing with coordinating her medical care in hospital (especially moving from unit to unit), an eviction, and one the most unthinkable things one would ever want to have to think of happening to a younger family member—on top of all the other things in my own life, added to all the everyday things one goes through. I should have gone insane, ten times over.
And it's on that note where HCCP came to my rescue on another front. While volunteering with them last year, I'd made a friend (photo at right) who happens to manage a psychiatric practice (or two?). My friend, who has become somewhat of a mentor to me, had me accepted into the practice, despite their not taking my insurance yet—they're in the process of taking it and will be able to retroactively bill for services. But were it not for this kind and compassionate gesture, were it not for having a therapist and a psychiatrist now, I'm not certain I would have made it through these past twelve months and especially this past summer.
Those who know me know that summers are my least favorite of the seasons. Given that I'm already on a low baseline, this past summer was nearly as stressful as the one after my car accident—perhaps more so, in different ways.
While I haven't been on social media that much (indicating a return to baseline), I have been returning. It's a slow process, though; most days I don't feel like looking at my streams. Or if I do look at my streams, I don't post much or respond to many items. But I every now and then I am moved to do so. Mostly on Twitter. And Google+. I do my best to maintain my LinkedIn account. I tend to post a bit on Pinterest because it's easy. But I've shied away from Facebook. And I still haven't gotten into Instagram. I just don't have the energy to deal with people. I know my depression, anxiety, and stress are still far off the charts. In fact, if we were in the "olden days," I'd be hospitalized for my depression, alone.
However, people today are no longer hospitalized for being chronically depressed, only if they have harmful tendencies, which my medications (and five nieces) keep me from reaching.
But my depression, like most things in life, has an ebb and flow. So about a month ago, I was moved to write a few articles regarding a local election in The Bronx. One of the candidates in this race didn't like what I'd written (speaking #TruthToPower) and went so far as to defame me in response. But you know what they say: if you must resort to argumentum ad hominem (or any logical fallacy, really) rather than responding with facts, then you have no response whatsoever.
I then read about the case of a 67-year old immigrant named Sujitno Sajuti, whom the Immigration and Customs Enforcement is trying to deport after having spent nearly 40 years in our country. And I felt compelled to write an article about it. Now, I'm finally finishing the article that I began writing earlier this year (that is, the one you're reading now).
But I didn't want to just write an article about myself. I want it to have a purpose, which is one of the reasons why I'm spending so much time writing about my caregiving duties. The other is because in reality, my caregiving duties do actually take up the vast majority of my time. But I do need to bring you up to speed with a few more goings-on in my rollercoaster life:
A few days ago, my sister told me that her cancer is back. This also is her fourth battle with breast cancer. She usually follows my mother two years after, so this is accelerated by about a year. While they both have the same breast cancer gene, they have different variants of it, and my sister's cancer is more menacing in some way, if I were to anthropomorphize it.
Mum has new tumors growing and appearing in her body. The Afinitor/Exemestane isn't working well, and she needs something that will work better. I'm investigating using marijuana to treat cancer. Mum's oncologist has approved doing this, provided that mum also continues with her "traditional" treatments. So mum is certified by her doctor (although there are additional steps that must be taken to get the actual card, which costs $125), but I'm getting conflicting information on just how to use marijuana to treat breast cancer. Again, she's ER+ PR+ HER2- BRCA1+. I need to know what the ratio of THC:CBD should be, and what dosage (in mg) she needs to take in order to fight her cancer.
Mum is on social security and doesn't have much money. One answer I was given to treat her cancer with medical marijuana was $50,000—and that doesn't even include ongoing maintenance (to prevent the cancer from returning) for the rest of her life, which would be about $1,000/month! That's not affordable for us (and I'd presume many other cancer patients), as much as I'd like it to be. I couldn't even imagine doing a GoFundMe campaign to raise that kind of money to pay such a medical treatment. (Yet another reason universal healthcare is a good option.)
Healthcare in the United States of America is broken beyond repair. We need a new system, one that's radically different from the one we have now. It needs to be simple, easy to administer, accessible to everyone, supportive of everyone, and flexible and open so that new technologies can easily and readily be incorporated and made available to those who need them.
I've had this feeling on a near-daily basis for the past twelve months. I feel as though my normal life has become amplified, like how a headache amplifies into a migraine. That is to say, I've been taking care of my mother, who on top of her ongoing health issues was diagnosed with her fourth round of breast cancer at the beginning of last November, supporting my sister with her four daughters (the eldest of whom I've previously written about is very special needs), helping my father (who's recently moved back to the area) launch a new business, and once in a while squeeze in an appointment or two for my own health needs that are ever-growing in this cosmic journey we're all in together as we swirl around through space on a water-covered rock orbiting around a giant blob of hydrogen and helium entwined in a fusion reaction we call the sun that we label growing older (which I'll be writing about in another article).
Before I get into it though, I'd like to explain some of the reasons behind my writing these personal update type articles now, rather than respond to people's questions at a later date.
First and foremost, I do not write these types of articles to elicit pity or sympathy from anyone. I'm not looking for an outpouring of "you poor thing" or "boo hoos." In fact, I'd much rather avoid those types of responses. Thankfully, my articles haven't generated such expressions of commiseration from my readers.
When I began sharing parts of my life online (quite some time ago), I found it to be cathartic. And then I had people reach out and thank me for sharing my stories, for it gave them hope—hope that despite all of my struggles, I'm still here, so perhaps they could make it, too. And perhaps that, above all else, is what propels me to continue sharing the intimate and personal details of my life.
For those who have been paying attention, I hadn't written anything in nearly a year—from my post about celebrating my 29th birthday last October to a series of posts I wrote this year regarding an election that caught my attention in The Bronx. Although that's not entirely true; I've actually been writing this article since around February of this year. I just haven't been able to finish it.
Lest I forget, I would like to thank all of my friends who kept looking after me. You noticed that I wasn't posting online, despite all of the posts that were being made to my accounts. You saw that I wasn't there, and thus knew that something was amiss and reached out to me. Despite my not responding to you, I saw all of your messages. So in addition to thanking all of you, I apologize to all of you for not returning your messages and calls, and not responding to your outreach. But it's your reaching out to me that carried me through these darkest moments.
And then there was the general election, after the primaries. I couldn't support either of the major party candidates. It was brutal, to say the least. Friends, some of whom I'd known in real life for years, deserted me. Discussions online became tenuous, at best. The air was permeated by tension. Forget about walking on eggshells, this was an era of connecting grains of sand together and stepping only on those interconnected grains.
My saving grace (in more ways than one) was having found Hartford Capital City Pride (HCCP), an LGBTQ Pride organization in Hartford, CT, where mum lives. So I put some effort into that. But their pride celebrations took place in September, and afterwards there was a bit of a lull. Besides, being the diva that I am, I had to make my exit from their pride event last year by having an ambulance enter into the middle of the entire event and whisk me away to hospital, where I was admitted and spent a good five or so days, inpatient.
Since this wonderful news came in around the holidays, I decided to go home and gather a few months' worth of clothes, prepared to return for an extended stay. Little did I know at the time just how extended my stay was going to be. I returned to CT in time to celebrate the holidays with mum and then began making appointments to see as many of her (at the time) 18 doctors as necessary to figure out what to do to combat her fourth round of breast cancer.
By now, we knew that she has one of the breast cancer genes (she's ER+ PR+ HER2- BRCA1+). After consultation with a number of specialists, including her oncologist hematologist, the plan was to begin treating the cancer with chemotherapy-like hormonal treatments. These pills come with fairly severe side effects, although perhaps not quite as severe as intravenously-given chemotherapy treatment.
Some of mum's other health issues (hence the
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| My paternal Grandparents, circa 1960s |
When my paternal grandmother (dad's parents, who raised my sister and me from the age of 3 when dad and mom divorced) died, I wasn't there for her. I don't blame myself for not being there because I was in hospital at the time (for pretty much an entire year healing from my car accident), so it wasn't really possible for me to be there.
However, I also know that I might have been able to prevent her death, or at least been there for her. And I know that I just contradicted myself, but not entirely. I highly suspect that the nursing home where Grams was staying to recover from a broken hip royally screwed up in their care for her because my sister-in-law (a trained medical professional) told me that she witnessed the staff dropping her in bed on multiple occasions while turning Grams to prevent bed sores. Had I been there, I probably would have noticed that or other things. And trust me, I would have raised holy hell if medical staff were mistreating Grams, much in the same way I did when medical staff were not treating my eldest niece, Jennal, as well as they should have been.
So I promised myself, if anyone else in my family got into a situation where they were sick, I would do everything I could to be there for them, and ensure they received proper medical care. And if not, to raise holy hell. I only found out what the nursing home did long after Grams died, and Gramps didn't wanna sue, he saw no point in it. Ugh.
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| Email from Twitter advising me that my account was suspended and would not be restored, ever. |
There are two important things to know about me: 1) Twitter is one of my primary social outlets (as well as social networks) and means of connecting with people, and 2) I abhor violence. Needless to say, receiving a notice from Twitter two days before Christmas that my @NiteStar account, which I had carefully curated to within the top 0.1% (or higher) of all Twitter users over quite a number of years, had been permanently shut down, sent my depression into a dovetail. (After a very long struggle, I eventually got my account back around April but my ranking has suffered and I haven't had the time/energy to bring it back up.) But I digress, Twitter account suspension could be an entirely separate article.
But I hadn't been able to get back home to New York, not so much because they've been screwing up her care up here but because things are pretty complicated. Mum is from a so-called third world Asian country, Thailand. She only advanced to a fourth grade education there because the government only paid for four grades at the time (after that, families had to pay and her family couldn't afford the private school fees). As such, mum doesn't understand a lot of what the docs and other medical folks are talking about with her.
Hell, most native-English speaking Americans don't understand what doctors tell them, especially when dealing with complex medical issues like cancer. Add to that her fear of having surgery that's prevented her from having both of her knees replaced (no matter how many doctors tell her it'll make her feel better and no matter how many reassurances we give her, etc.).
Add in her mental health issues like crippling anxiety and panic disorders with cyclothymia, some personality disorders, and OCD, all of which cause memory issues resembling dementia, these further exacerbate dealing with all of mum's other medical issues. To make matters worse, she refuses to accept that treating her mental health issues will make any difference and thus refuses to see a therapist or psychiatrist (her PCP prescribes a few meds that she's been taking for a while).
With mum's language barrier issues, her lack of a formal first-world education, her 21 doctors, and 40-plus medications (I did mention that she takes
Mum's doctors often recognize and thank me for being there for her, and for helping them. They recognize that mum is getting better care with me taking her to all of her appointments than had I not been there. And they recognize that they can do their jobs better because I am providing them with all of the information they need to do their jobs, on hand, that they may not readily have on hand or that patients may at times be reluctant to provide. And yes, mum does occasionally become angry with me when I provide what she deems to be too much information to the doctors; however, I know that without that information, they can't do their jobs properly. It's a double-edged sword that comes with mixed emotions.
Additionally, I know how to research what the doctors are saying. Often, I can do that in real-time during the appointments, as they're speaking, on one of the mobile devices that I'm usually toting around with me. I'm able to ask pertinent questions, including inquiring about different treatments, alternative therapies, etc. I would posit that most individuals aren't as proactive with even their own medical care, and most doctors don't give their patients the time to ask questions or mull things over.
And yes, I also do the same during my own medical appointments, of which I've been having more than my fair share, much to my own chagrin. Those appointments have thus far discovered vestibular migraine headaches, a BMI far too high for anyone's (including my own) liking, COPD (which is the result of having grown up in a 3-pack-a-day smoker's household (I never smoked), being morbidly obese, and having asthma), confirmation via triple MRI of severe injuries to my back that is the source of very bad back pains, calcification (deposits?) in my brain, palpitations, elevated blood pressure (but not enough for a diagnosis of hypertension), some dermatological issues including dermatographia, some new allergies, and a few other sordid issues that we haven't addressed and probably a bunch more that we have yet to uncover. 😛
So I started 2017 on a very down note. No Twitter, mom's recurrence of cancer, I had been hospitalized and my physical health issues seemingly doubled (tripled) overnight, it looked like I'd be spending an extended period of time in CT under very stressful conditions, and I was getting an amazing 0.3% raise in my Social Security Disability Income (this amounted to a whopping $4/month!). Just for starters.
As we began mum on the hormonal chemo treatment, her anxiety ran through the roof. Panic attacks became a daily part of life, and cyclothymia blossomed into full-blown bipolar. Her stomach pains were worsening, so she was sent to an oncological surgeon (number of doctors:
With the Ibrance less effective than before, she was switched to a second treatment (Afinitor/Exemestane) and eventually sent to a radiation oncologist (number of doctors: now 24). Mum went through 28 days of daily radiation (15 minutes of radiation treatment) in May, which brought down the size of some of the bigger tumors but caused severe type 2 radiation burns that took months to heal (more than twice the expected healing time, due in part because of mom's aforementioned difficulties). On top of this, side effects from the radiation treatment and Afinitor caused a 40-pound weight loss, leaving her very weakened.
All of the combined effects led mum to her first-ever overnight hospitalization stay, which she spent at Hartford Hospital. There were a number of issues that took place there (which deserve their own article). Mum's overnight stay lasted for just over two weeks, on five different units. She was seen by a number of specialists. When they finally stabilized her, she was discharged to Avery Heights for rehab, in order to regain her strength. A month after that, she returned home with in-home care.
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| Mom with her five granddaughters, while at Avery Heights for rehab after her hospitalization. |
After Jennal's hemispherectomy (which I strongly urge you to read about), she had become relatively seizure-free with appropriate anti-seizure medications. However, she now has seizures whenever she gets her period or becomes stressed, gets upset, etc. Additionally, Jennal, who is very special needs with severe epilepsy, cerebral palsy, and multiple learning disabilities (among other ailments) has been brainwashed by this predatory monster into believing a deranged and psychotic version of reality: that this abominable creature of some 40-plus odd years of existence on our planet was in a "loving relationship" with Jennal, an 11 year old child.
I cannot write any more about this than I have due to the pending criminal case, except to question why Westchester County District Attorney Anthony A. Scarpino Jr. and his office aren't charging the vile manifestation of evil that committed these unspeakable acts against Jennal with more serious felony charges, such as multiple counts of Rape in the First Degree, for which the facts certainly fit the statute, New York Penal Law, Article 130, S 130.35. This way, the dastardly fiend would, upon conviction, be able to be sentenced to multiple, consecutive terms of 20-25 years imprisonment, thus guaranteeing they would never, ever, ev-ah see or smell the fresh air and light of freedom in their life again, even for one quintillionth of one millisecond.
I very much question DA Scarpino's decision in charging the grand jury with the crimes presented. Like most New York district attorneys, they're playing it safe, instead of fighting for justice on behalf of the victims of serious and heinous crimes. Politics has turned district attorneys offices all over the State of New York (and perhaps the nation) into prostrated statisticians who care more about conviction rates than meting out justice. If Hon. Jeanine Ferris Pirro were still the district attorney for Westchester, I don't think she, being such a victim's advocate, would have been so lenient in seeking an indictment from the grand jury. But I digress, this is another article for another time...
As I see the reality of what has happened to my niece grow on her (we video chat), and feel it even more when we visit, my heart sinks further and further. How do I help her? How do I heal her? How can I make it all better for her? How can I make her understand what's happened? Is Jennal even developmentally ready to be able to cope with understanding what's happened to her, or even be able to understand what's happened to her? This last part is slowly, very slowly starting to sink in, as each day crawls by in her mind.
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| Jennal, dressed for Halloween 2017. |
I spent the summer attempting to assist and coordinate mom's ever-changing care, in hospital, rehab, and home, assist my father in setting up a new financial consulting business now that he's moved back to the area, deal with the complete clusterfuck of the news my sister uncovered, aid my sister in keeping her family safe until the perpetrator was caught by law enforcement, provide support to my sister, my mother, my brothers, and my father, all whilst attempting to keep to my own medical appointments, and somehow maintain what little sanity I still possessed.
And to top it all off, in the broiling heat of August, I was evicted from my home in New York. Essentially, I hadn't been able to get to my apartment to take care of it. I asked my roommate to do certain things so I could AirB&B my bedroom to be able to pay the rent, as I was staying in CT. And I guess he didn't feel comfortable doing them without my physically being there, so that never got done. I no longer was in a rental assistance program as of the beginning of the year (that's another story for another time), and the full rent wasn't being paid (I don't have $1,000/month for rent).
I couldn't even break away to return to New York during the eviction proceedings because they took place right when mum went in hospital. As such, I was evicted from my apartment, and had to run down to New York on the last weekend in August in order to gather my belongings and shuttle them up and throw them into an overpriced storage unit. I used U-Haul to make the move, and I had terrible experiences with them. I had a friend rent a truck, and I reserved a storage unit for whatever of my belongings I could rescue from my apartment.
I had major problems with both the truck, as well as the storage unit. But I haven't had the time/energy/strength to (a) find another, more affordable storage facility and (b) move my belongings to such a facility. As such, my belongings from New York remain in U-Haul's speciously- and over-priced storage facility down the street here in Hartford.
So during mum's hospitalization, I was dealing with coordinating her medical care in hospital (especially moving from unit to unit), an eviction, and one the most unthinkable things one would ever want to have to think of happening to a younger family member—on top of all the other things in my own life, added to all the everyday things one goes through. I should have gone insane, ten times over.
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| My Drag Queen Fairy Godmother in Hartford, CT |
Those who know me know that summers are my least favorite of the seasons. Given that I'm already on a low baseline, this past summer was nearly as stressful as the one after my car accident—perhaps more so, in different ways.
While I haven't been on social media that much (indicating a return to baseline), I have been returning. It's a slow process, though; most days I don't feel like looking at my streams. Or if I do look at my streams, I don't post much or respond to many items. But I every now and then I am moved to do so. Mostly on Twitter. And Google+. I do my best to maintain my LinkedIn account. I tend to post a bit on Pinterest because it's easy. But I've shied away from Facebook. And I still haven't gotten into Instagram. I just don't have the energy to deal with people. I know my depression, anxiety, and stress are still far off the charts. In fact, if we were in the "olden days," I'd be hospitalized for my depression, alone.
However, people today are no longer hospitalized for being chronically depressed, only if they have harmful tendencies, which my medications (and five nieces) keep me from reaching.
But my depression, like most things in life, has an ebb and flow. So about a month ago, I was moved to write a few articles regarding a local election in The Bronx. One of the candidates in this race didn't like what I'd written (speaking #TruthToPower) and went so far as to defame me in response. But you know what they say: if you must resort to argumentum ad hominem (or any logical fallacy, really) rather than responding with facts, then you have no response whatsoever.
I then read about the case of a 67-year old immigrant named Sujitno Sajuti, whom the Immigration and Customs Enforcement is trying to deport after having spent nearly 40 years in our country. And I felt compelled to write an article about it. Now, I'm finally finishing the article that I began writing earlier this year (that is, the one you're reading now).
But I didn't want to just write an article about myself. I want it to have a purpose, which is one of the reasons why I'm spending so much time writing about my caregiving duties. The other is because in reality, my caregiving duties do actually take up the vast majority of my time. But I do need to bring you up to speed with a few more goings-on in my rollercoaster life:
A few days ago, my sister told me that her cancer is back. This also is her fourth battle with breast cancer. She usually follows my mother two years after, so this is accelerated by about a year. While they both have the same breast cancer gene, they have different variants of it, and my sister's cancer is more menacing in some way, if I were to anthropomorphize it.
Mum has new tumors growing and appearing in her body. The Afinitor/Exemestane isn't working well, and she needs something that will work better. I'm investigating using marijuana to treat cancer. Mum's oncologist has approved doing this, provided that mum also continues with her "traditional" treatments. So mum is certified by her doctor (although there are additional steps that must be taken to get the actual card, which costs $125), but I'm getting conflicting information on just how to use marijuana to treat breast cancer. Again, she's ER+ PR+ HER2- BRCA1+. I need to know what the ratio of THC:CBD should be, and what dosage (in mg) she needs to take in order to fight her cancer.
Mum is on social security and doesn't have much money. One answer I was given to treat her cancer with medical marijuana was $50,000—and that doesn't even include ongoing maintenance (to prevent the cancer from returning) for the rest of her life, which would be about $1,000/month! That's not affordable for us (and I'd presume many other cancer patients), as much as I'd like it to be. I couldn't even imagine doing a GoFundMe campaign to raise that kind of money to pay such a medical treatment. (Yet another reason universal healthcare is a good option.)
All of the this boils down to a few things.
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| Ranking of Top 11 Healthcare Systems by Country |
Medicare4All may or may not be the answer. But something similar to that probably is the way to go. The United States is woefully behind the rest of the industrialized world in providing human services such as healthcare, childcare, eldercare, etc. You can't fix a system that is designed to benefit only a few, that by its very design works only for a handful of people. The only way to fix our human care services in this country is to step outside of the box, rip them down, and build them back up, from scratch.
Next, we need to ensure that those caring for loved ones are receiving the support and care they need, whatever care that is. My family does what they can to help and support me in my caregiving duties, particularly with respect to mum. But it's not enough. I need answers that I'm not getting or can't find, especially with respect to the use of medical marijuana as a treatment for breast cancer. The research isn't out there because the US Government still treats and classifies marijuana as class 1, the most dangerous category of drugs.
Additionally, there are things that I simply cannot physically do, so they're just not getting done. And mum just goes on and on about them, every single day. Repeatedly. Hour after hour. Sometimes, nonstop. I'm not in a position, financially, to do certain things, some of which are health-related. And others are things I'd just like to do. And all of this just stresses me the fuck out.
Additionally, there are things that I simply cannot physically do, so they're just not getting done. And mum just goes on and on about them, every single day. Repeatedly. Hour after hour. Sometimes, nonstop. I'm not in a position, financially, to do certain things, some of which are health-related. And others are things I'd just like to do. And all of this just stresses me the fuck out.
For instance, there's a weight-loss medication that my doctor believes will work for me, Qsymia. It isn't covered by my insurance (Medicare doesn't cover any weight-loss treatments except some surgeries), and it costs $196 per month—a price I certainly can't afford as it would eat up more than 13% of my monthly SSDI income. Qsymia's maker, Vivus, offers a discount savings program, but not for those of us who are on Medicare or Medicaid (and it only shaves $65 off the monthly price). So either way, I'd still be screwed.
What all of this has done is force me to do something I do my absolute best to avoid: admit that I need help. I need help caring for my mother from someone who's not in my family. I need help getting her apartment organized. I need help caring for my sister and her daughters. Oh, and did I mention that there also were "grooming" behaviours uncovered that were taking place with my sister's three other, much younger daughters? I need help caring for the rest of my family. And I need help caring for ... myself.
I need to get the right information on exactly how to use medical marijuana to treat breast cancer, both for my sister (who's triple-negative) as well as my mother. And then we need help paying for it, because insurance doesn't cover medical marijuana for any reason, and we can't afford it. The only two women in my immediate family are both, right now, fighting metastatic breast cancer for the fourth time, and I refuse to let either of them fall victim to that disease.
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| Fuck Cancer |
As someone who is disabled, I need assistance. I need housing (technically, I'm homeless and just staying with mum, who has a Section 8 voucher that I cannot be included on, and I don't know why as I am her immediate family). I need help with housekeeping duties. I need help getting out into the community. I need help getting to appointments. I'd like to become more active in the community. But I feel like I've just given birth. I don't want to move. I'm in constant pain. I just want to sleep.
As a person living in the 21st century, I need another 42 hours in my 24-hour day, as well as a few clones of myself who are all connected to me and can feed information into my brain, on-demand.
I recently had my 44th Birthday. (I'll never complain about receiving a late birthday present, and i'ts never too early to shop for the holidays; my Amazon profile has a few wish lists) And for the first time, I'm admitting my actual age. Palindromic numbers have always felt special to me. I'm hoping that this year is full of magic and beauty. I don't know what to expect, which makes me uneasy. And, I'm scared. But with all of you, my friends and family who "live online," I know I'll get through it. (Of course, this probably should be yet another article...)
Speaking of birthdays, I'd really appreciate your help with a project that I'm working on regarding people's views on aging. I have a quick survey (about 12 questions) to gather their views. I'd really appreciate it if you would fill it out. If you could ask all of your friends to do the same, that would be really super. You can use the following link when sharing the survey with others: https://goo.gl/forms/WC9ngn9YJnhtNllD2
Speaking of birthdays, I'd really appreciate your help with a project that I'm working on regarding people's views on aging. I have a quick survey (about 12 questions) to gather their views. I'd really appreciate it if you would fill it out. If you could ask all of your friends to do the same, that would be really super. You can use the following link when sharing the survey with others: https://goo.gl/forms/WC9ngn9YJnhtNllD2
Age isn't the only topic that I'm' gathering people's views and opinions on. Do you feel that you have everything you need to get through your day? Your week? Your month? Or are there things that you need? If you're a caregiver who is overwhelmed, I'd especially be interested in hearing from you.
Let me know how you feel in the comments, below.
Until next time...
My eternal thanks to my dear friend Xander Rühl, who as usual helps to proofread many of my articles, including this one. :)
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