Monday, March 14, 2022

MY NEW HAT :o)

=====

I was all set with a freshly-written blog post when a friend sent me a link to an article from the Washington Post ... it was too perfect not to share excerpts from, and so my other post will follow in a day or two.

The end of my life was killing me by Annabelle Gurwitch

My Stage 4 lung cancer diagnosis came out of the blue after I went in for a routine coronavirus test in 2020. In my first year of treatment, I made [lemonade out of lemons,] determined to squeeze every drop of whatever time I had left. [...] My newfound enthusiasm for life was made possible by the brave new world of biomarker-targeted therapies that granted me a welcome, if temporary, reprieve from this 'we’ll-do-the-best-we-can-for-as-long-as-we-can' disease.

The plain-speaking oncologist treating me described the therapies this way: "Your cancer is a lawn. These medications keep the grass mowed but don't pull out the grass at the roots. Eventually, the cancer figures them out, and the meds stop working." Some people's cancer doesn't respond, some receive scant months of benefit, while others eke out five years before switching to protocols with potentially harsher side effects.

I braced myself for bad news and the onset of fatigue, intestinal discomfort, and [...] side effects that can, in their more extreme forms, render the medication intolerable. While the rest of the nation hoarded hand sanitizer and toilet paper, I stocked up on Imodium, electrolyte drinks, intensive moisturizers, coffee, and dark chocolate. [...]

After my first dose of the [Covid] vaccine in April, I hit the ground running, determined to carpe every diem. I double-masked and flew across the country for an "end of my life reunion tour," convinced that this might be my last ambulatory opportunity to see cherished friends. Each morning for two weeks last spring, I trekked to my [...] favorite cafe on the Upper West Side in Manhattan. Cherry blossoms swirling like confetti, these reunions careened between celebratory and funereal, leaving me flat on my back for the remainder of the day.

I was overcome by exhilarating, almost inebriating, episodes of gratitude overload brought on by an appreciation of small pleasures. That certain slant of light! French fries! [...] Jacquie: Kitty whiskers!

For the full article, click here

Love,

Friday, March 11, 2022

Yesterday (March 10th) was the two-month anniversary of my cancer diagnosis ... in many ways, it feels more like two YEARS in terms of all that has taken place since then, and all that I've learned.

=====

Must love tigers!

Tiger Taming the Cancer Monster

"Wanna Play?" by Kathrin Federer -- print for sale here

=====

Taste buds are sensory organs found on our tongues that allow us to experience tastes that are sweet, salty, sour, and bitter. The average person has about 10,000 taste buds, and they're replaced every 2 weeks or so.

Chemotherapy drugs can damage the taste buds; almost 50 percent of people undergoing cancer treatment experience taste changes (myself included). Changes vary from person to person, but common changes include food having a metallic taste, bitter foods tasting more bitter than usual, and sweet foods tasting either more or less sweet than usual.

Even before my cancer diagnosis, I had made the decision to switch to a healthier, primarily plant-based whole foods diet, eliminating caffeine, white flour, dairy, meat/poultry, refined sugar, and alcohol.

After months of religiously sticking to the above regimen, I'd lost 16 pounds and felt much healthier and energized; however, I suddenly found myself having a craving for a ...

brownie ice cream sundae!

Passionately adhering to the famous quote:

I researched non-dairy ice cream options and Keto-friendly brownie recipes, and was able to satisfy my craving without being TOO naughty. ;o)

    ... and it was FABULOUS!    

Love,

Tuesday, March 8, 2022

This morning, I posted to Facebook for the first time about my journey with cancer and about my blog. I rarely use Facebook, except to post on the Pets Bring Joy FB page, but it occurred to me that many of my friends probably didn't know about my diagnosis. More importantly, I felt that there were many more people whom I could reach to share what I am learning about ovarian cancer and the importance of genetic testing.

Because it will take a bit of effort for friends just now discovering my blog to "catch up," I thought it would be worthwhile to post a recap of key points that I've covered since launching my blog in February.

Here's my blog recap (in "stream of consciousness" fashion):

Hello to friends who are just discovering my blog today.

If you get a chance to read through all of my previous blog posts, you will find a lot of important detailed information about genetic testing. There are certain genetic mutations that are affiliated with a 50% chance of getting ovarian cancer (and of course other mutations that are similarly affiliated with other cancer types).

Sadly, because there are no routine screening tests for ovarian cancer, and often very minimal symptoms, most women are diagnosed at stage 4, as was I. There are mammograms for breast cancer and Pap tests for cervical cancer, but nothing for ovarian cancer. The only option at the moment for women at risk (women who have a family history of gynecologically related cancers) is to undergo genetic testing, which I cover in depth in my prior blog posts ... please take time to read them.

Here is the course of events that led to my current situation ...

In February 2021 I had a sudden onset violent vomiting attack with no other symptoms. I went to the emergency room to make sure I wasn't having a heart attack, which they determined I was not.

I had two more such attacks within the next week, both of which were affiliated with a new symptom of abdominal cramping. I went back to the ER and they did all possible GI tests imaginable ... they found nothing wrong with my colon, intestines, stomach, gallbladder, liver, pancreas, appendix, yada yada. I then had an abdominal CT scan in March that was 100% normal: from the waist down, I was supposedly "clean as a whistle."

My symptoms then completely disappeared as mysteriously as they had appeared. And so I forgot about it ... until they recurred in December, but didn't go away, while Steve and I were in the Galapagos Islands on vacation.

As soon as I got back from our trip, I went back to my internist, who said that at this point she wanted to refer me to a gastroenterologist because she "couldn't find anything wrong." Even then, there was no discussion of a possible gynecological connection ... very dismaying in light of my having a woman internist to whom I had disclosed my family history upon becoming a patient: my Mom died of breast cancer at the age of 66, and one of my father's sisters died of ovarian cancer at a similar age.

Because it was going to take close to a month to get in to see my gastroenterologist, I begged her to do SOMETHING in the way of further diagnostics in the meantime. She hesitantly sent me back for a repeat CT scan ... both she and I were expecting it to come back normal, as my CT scan 9 months earlier had.

Instead, it came back with a diagnosis of stage 4 peritoneal carcinomatosis ... definitely not good news. This meant that cancer had spread all throughout my abdomen, including the peritoneal lining surrounding all abdominal organs, in just nine months. Even when we found this out, my internist still insisted on sending me to a GI oncologist; I had to request that she also refer me to a gynecological oncologist, because my initial Internet research indicated that peritoneal carcinomatosis is often a result of metastatic ovarian cancer. A week later, a biopsy confirmed that it was indeed ovarian in origin.

Ovarian cancer is very insidious ... it usually starts out either in the fallopian tubes or in the ovary with zero symptoms. As it turns out, there are very few pain sensors within the abdomen, which is why cancer has to be pretty advanced before there are any symptoms. And, as I already mentioned, there are presently no routine screening tests for ovarian cancer.

I'm passionate about educating other women about ovarian cancer and the importance of genetic testing/screening so that they don't have to go through the same experience that I've gone through ... hence, my blog.

Because I'm not an active Facebooker, it didn't occur to me to post to Facebook about my blog until this morning. Steve and I had tried to reach out to as many friends and family individually as we could, but we clearly missed some important people in our circle.

Please take time to read my previous blog posts, and thanks for caring: about me, about Steve, about your own health, and the health of your loved ones. Please share the link to my blog with anyone else whom you feel it could be beneficial to.

Love,

Friday, March 4, 2022

© 2022 Sun & Moon Yoga
3811 Lee Highway (soon-to-be Langston Blvd.), Arlington, VA 22207
Visit their website: Sun and Moon Studio

Ukraine is on our minds this week as we watch with [...] heartbreak all that is unfolding. In the midst of crisis, whether near or far, whether personally affected or not, it's [as] important to pay as much attention to the way events lodge inside [of] us as we do to the events themselves.

If we ignore the news, we lose the ingredients for caring, but if we consume the information without taking time to process and digest the tension, fear, despair, or anger it may provoke, we risk a level of overwhelm that leaves us unable to respond usefully.

Teacher and scholar Stephen Cope describes the two pillars of yoga as clear seeing and calm abiding. We can use the tools of mindfulness to stay informed, movement to stay grounded, and breath to remind us that we are all profoundly connected. [...] Take some long, [deep] breaths; lie down on the floor and stretch your body, or stand on your feet and feel your strong roots; take a walk with a friend; or [attend] yoga class. And with every act of self care and outreach, bid a grateful welcome to [our beautiful, interconnected souls].

=====

In President Biden's State of the Union address earlier this week, he offered a Unity Agenda for the Nation, outlining "[f]our big things we can do together: beat the opioid epidemic; make the way we address mental health equal to the way we address physical health; support our veterans; and end cancer as we know it."

=====

Cancer update:

Because my chemo treatment on the 23rd hit me so hard, my medical team decided to give me a break from chemo this week -- I resume treatments on Wednesday March 9th, and the regimen is changing a bit to give me two smaller doses of Carbo/Taxol every week instead of one massive dose of Carbo every three weeks. My March 9th treatment will be #5 out of 12 pre-surgery ... counting down the weeks!

Love,

Sunday, February 27, 2022

Cancer update:

Wednesday the 23rd was my 4th chemo session, involving two chemotherapy drugs -- Paclitaxel and Carboplatin-- instead of one (I get two vs. one every 3rd week).

This round of chemo is hitting me much harder than previous sessions -- not a surprise, as the "collateral damage" effects of chemo are cumulative. I spent most of the day Friday and all day Saturday in bed; fingers crossed that I can spend more time "upright" today. :o)

Two bits of good news came with my weekly bloodwork on Wednesday:

• My immune system rallied due to a five-day series of injections to boost my bone marrow's production of white blood cells -- the level was higher on Wednesday than before chemo started. I will need to repeat these injections every 3 weeks.
  
  
• My CA125 level, a marker for ovarian cancer, has dropped approximately 85% since chemo started, which is a promising sign that the chemo is tamping down my cancer in preparation for surgery.

Eight more weeks of chemo to go ... CT scan to formally assess progress in five weeks, on 3/31 ... appointments with five (!) oncologists/surgeons (comprising two medical teams, at Johns Hopkins and Inova Schar) thereafter ... and then hopefully a decision on a path forward by late April.

=====

A good friend of mine pursued genetic testing in response to my blog, and just learned that she is BRCA positive for ovarian cancer. She is consulting with a gynecological surgeon as to what is most prudent for her to do next, as she is already a survivor of colon cancer.

Recall the statistics that I posted in my January 29th blog:

• Number of women overall who are likely to get ovarian cancer by age 70: 1 out of 100
• Number of women with the BRCA1 mutation likely to get OVARIAN cancer: 40 to 59 out of 100
• Number of women with the BRCA2 mutation likely to get OVARIAN cancer: 17 to 18 out of 100

Ovarian cancer risk jumps from 1% to anywhere between 17% and 59% with a BRCA mutation - a factor of 17x - 59x.  Sobering.  PLEASE CONSIDER BRCA TESTING.

I'm getting tested on March 4th ... will report my results in a future blog.

Love,

Friday, February 25, 2022

What's better than having a bluebird of happiness on your bird feeder?

Spotted on Steve and Jacquie's bird feeder on Friday AM.

Having TWO on your bird feeder!

Shortly thereafter, Mrs. B joined Mr. B. :o)

=====

Life imitates art:

Little Man (Barker kitty #4) is a wonderful companion!

Love,

Tuesday, February 22, 2022

I've been researching and reporting on breakthroughs in cancer treatments ... today's blog is about something a bit more futuristic than most, but fun to think about: nanobots.

From an Internet article by Labiotech.eu:

"Nanobots are tiny biological machines that can deliver drugs to a target destination in the human body to make them more efficacious and to reduce side effects, which are the biggest challenges of drug delivery. Traditional drug treatments, for example cancer chemotherapy, can come with toxic compounds that indiscriminately damage healthy tissues. Nanobots could circumvent this issue by protecting the drug until it's delivered to the intended target. The goal is getting the right dose to any part of the body without collateral damage. To achieve this, nanobots are made by combining inorganic elements or materials with biological components, such as cells, proteins or DNA. This requires the collaboration of researchers from several branches of science."

Think of them as molecule-sized Mars rovers: if NASA can send a rover to Mars over a 9-month journey and successfully land it exactly where they wish on the Red Planet, so too can we eventually do the same inside the human body -- different scale, comparable technology challenges.

To read more about the future of nanobots in healthcare, please click here.

Does anyone remember the movie Fantastic Voyage, starring Raquel Welch, release date: August 24, 1966? The plot: "The brilliant scientist Jan Benes develops a way to shrink humans and other objects for brief periods of time. Benes, who is working in communist Russia, is transported by the CIA to America, but is attacked en route. In order to save the scientist, who has developed a blood clot in his brain, a team of Americans in a nuclear submarine is shrunk and injected into Benes' body. They have a finite period of time to fix the clot and get out before the miniaturization wears off."


Watch on Amazon Prime
Watch on Turner Classic Movies

Of course, the engineer + cat lover in me would ideally like these nanobots to take the shape of cats: Nanocats ™ to be specific. ;-)

I'm EAGER to receive my first injection of a clowder of nanocats!

Perhaps I can follow in the footsteps of entrepreneur Bill Gates and launch Nanocats International ™... ? ;o)))

Love,

Sunday, February 20, 2022

One of the things that makes life so very precious is the fact that it's finite.

In the classic 1999 movie Bicentennial Man, Robin Williams portrays an advanced android (robot) named Andrew on a quest to become human. He had the full depth of emotions of a human being from the very beginning, thanks to a quirk in his AI technology, and as a robot was effectively immortal. The hardest part for him was that the humans he loved were not.

When he first approached the Global World Council (future equivalent of the United Nations) to petition for being declared human, his request was declined. The explanation given to him:

"Human beings will accept the existence of an immortal robot, but they will not accept the existence of an immortal human. It would cause them great envy and anger. We therefore must decline your request; you are, and will always remain, a robot -- a piece of machinery, nothing less, nothing more."

The movie is well worth a (re)watch, but be prepared for a tear-jerker ... watch it with someone you love and be prepared for major hugging when the movie ends.

Love,

Friday, February 18, 2022

Yesterday was a big day in terms of information gathering. Steve and I traveled to Baltimore to meet with Dr. Fabian Johnston at Johns Hopkins; I had initially set my sights on meeting with him after first receiving my diagnosis in early January when we thought that his specialty -- cytoreductive surgery with intraperitoneal hyperthermic chemoperfusion (HIPEC) -- was the absolute answer in terms of my cancer treatment. Between then and now, there's been a lot more information forthcoming, and the answer isn't so clear-cut.

Major take-aways:

He and my primary oncologist (Dr. A) are of the exact same opinion in terms of my course of treatment:

1. 9 more weeks of chemo (through April 20th);

2. Repeat CT scan in late March to see how my cancer is responding to the chemo;

3. If my cancer is "platinum responsive" (my type of cancer -- serous -- is generally known to be, but not always), then there will be evidence of tumor shrinkage, and the next step will be surgery to remove "significant" cancerous tissue, followed by

4. More chemo after surgical recovery.

Step 3 is where paths diverge: depending on who were to perform the surgery, the extent to which tissue/organs are removed would vary, and the decision of whether or not to use HIPEC would also vary. These decisions will need to be made thoughtfully, both because the aftermath is fairly brutal (3 week stay in the hospital with up to a full year of recovery time) and because there is not enough formal study data available yet to ascertain whether HIPEC is a value add or too severe to consider undertaking.

I won't have enough information to make these decisions until mid April ... in the interim, I need to stay the course with my chemo treatments, healthy eating, keeping a positive mindset (Steve as well), introducing regular exercise in the form of daily walks and yoga, and maintaining all of the loving relationships that are sustaining my soul.

=====

Stop the presses! The other amazing outcome of our visit to Johns Hopkins was as a result of chatting with a medical student named Austin Maddox who participated in my appointment with Dr. J. I was lamenting the fact that there isn't a good screening mechanism for ovarian cancer, and that I've been advocating BRCA testing via my blog within my circle of friends and family. Austin told me about research that he was involved in while getting his Ph. D.: a simple blood test that can identify numerous cancers, including ovarian cancer, at Stage 1. The test, known as CancerSEEK, is in fourth-phase trials and looking promising for FDA approval within two years! CancerSEEK is a blood test (also called a liquid biopsy) designed to detect multiple types of cancer at the earliest stages possible, before noticeable symptoms occur. For more information, please visit thrivedetect.com/cancerseek

Love,

Wednesday, February 16, 2022

I'm posting about Covid today ... the New York Times published an excellent article on Feb. 14th that I want to share with everyone: a guide about five (5) important ways of protecting vulnerable people -- the elderly, immunocompromised*, and those who are unvaccinated** -- from Covid.

Click here to review the full article published in the New York Times -- The Morning -- Feb. 14, 2022.

* As a result of my chemotherapy, I'm temporarily considered immunocompromised: today's pre-chemo blood test revealed that I'm below the safe level for neutrophils, the most prevalent of eight (8) types of white blood cells found in the human body. Neutrophils are the WBCs responsible for fighting off infections, so it's particularly important that I practice social distancing while I'm receiving chemotherapy.

** Includes underage children who are not eligible for vaccinations, adults who are choosing to not be vaccinated or for whom vaccines are unavailable, and families opting to not vaccinate their children.

Love,

Tuesday, February 15, 2022

For today's post, I want to turn attention back to genetic testing.

In response to my blogging, several of my friends have inquired about getting BRCA testing done through their primary care physicians. One friend was told that insurance will only pay for it if there's a family history of breast or ovarian cancer; another was told that insurance will only pay for it if the patient has already been diagnosed with cancer (!). Fortunately, a third friend did get her physician to refer her for genetic testing, not only for BRCA1 and BRCA2 but for a number of other well-understood gene mutation/cancer correlations.

I'm scheduled for genetic testing in early March, and we're going to ensure that Steve is referred for genetic testing through his primary care physician as well.

I continue to encourage everyone following my blog to persevere in requesting such testing of your physicians, whether it be a primary care physician, gynecologist, or other specialist; I firmly believe that knowledge is power.

=====

I believe strongly in serendipity ... I also believe that we are continuously surrounded by beneficial information and opportunities relevant to where we are in life, but that we must be open to seeing them.

I was at CVS the other day to pick up a prescription and happened to glance at a display featuring this special edition National Geographic magazine:

The very first article I flipped to is entitled "Every Body is Unique" with the subtitle "A new era of health care is coming. Precision medicine will monitor our health moment to moment, predict our risk of cancer, heart disease, and other ailments -- and [will] devise treatments tailored to each of us." I purchased the magazine and read the article with avid interest, which in turn led me to do some additional Internet research.

Bottom line: I'm learning that the forefront of cancer research and the future of cancer treatment lies in individualized care based on one's unique genetic blueprint.

Thus, my passion and insistence that my loved ones pursue genetic testing.

Love,

Thursday, February 10, 2022 - 1 month anniversary of my cancer diagnosis

Living with cancer means continuing one's life in as normal a way as possible, but having to make accommodations so as to focus on one's health, medical care, and recovery as the top priority.

Steve and I have a loving family of "fur children" consisting of four cats, three hamsters, and a mouse -- all rescues, and my friends and family know of my passion for rescue through Pets Bring Joy. People who know me well also know of me as the Analogy Queen, because I have a knack for coming up with the perfect analogy for most situations.

With that in the way of background, by way of analogy, I view living with cancer like receiving a pet rhinoceros as a gift (not a baby -- a full grown adult). Let's call her Carmen.

By virtue of her sheer size, Carmen cannot be ignored or forgotten ... she's always looming in the background, if not blocking the way completely. Her care and feeding requirements outshadow those of the entire rest of our family tenfold.

Did we WANT a pet rhino? Not even remotely. Is Carmen a pain in the a** most of the time? YES! But does having a pet rhino have redeeming qualities? Surprisingly, yes, in two significant ways.

#1

I had to reprioritize my time to make room in my schedule for Carmen's care. That led to really thinking about what matters to me (for those of you familiar with Steven Covey's Seven Habits of Highly Effective People, it's his concept of "big rocks"*), something that I hadn't done (but SHOULD have) when I retired from my software engineering job in November 2020. Upon retirement, I transitioned immediately into running Pets Bring Joy full-time rather than taking the (temporary vacuum) in my life and giving serious thought to how best to use that time. Carmen's arrival has forced me to deal with that now.

* IMPORTANT: I ask that you please take a few minutes now to watch a classic video on YouTube about the concept of big rocks by clicking here - it was life-changing for me.   Want to chat with me about big rocks? Email me here.

Without question, my relationship with Steve, friends, and family (including our fur children) are critically important, and so time must be preserved for this as a big rock. I did some "time schedule house-cleaning" to eliminate other unessential activities in order to fit Carmen in (including passing off the PBJ rescue operation wholly to Lori -- thank you for being there!) ... not a bad practice for everyone to do now and then (how about NOW? ;o).

#2

Having a pet rhino has brought me new relationships with wonderful people who are drawn to learning more about her. Granted, it's not going to lead anyone else to go out and seek a pet rhino for themselves, but learning about our experiences is hopefully broadening their life perspectives as well.

Life is a journey with unexpected twists and turns along the road ... it's all about how we accept the unexpected challenges, accommodate them in as positive way as possible into our lives (even when they first present as a seemingly unpassable roadblock), learn from them, and continue on our journey as hopefully better people.

Love,

Tuesday, February 8, 2022

This post was actually written on Sunday ... my spirit is much brighter today (Tuesday), but I still wanted to post it because it has some important messages that I didn't want to sweep under the rug.

=====

I'm struggling to write this blog post because I'm trying to lift myself out of a place that's a bit darker than usual. It's inspired by dear friend who wrote the following in response to my last blog post:

"You are providing us with such a good road map that eliminates the guessing as to how we should respond in your case as well as similar situations with others. You mentioned feelings of grief and fear, Jacquie. I hope at those times that you as well as Steve have folks with whom you feel comfortable sharing those emotions."

It is indeed difficult to share grief and fear with others; Steve and I have each connected with a counselor with the Inova Schar Living with Cancer program, and that is probably the best outlet for those sorts of feelings, but one can't help but realize that when the conversation ends, they hopefully get to go back to a cancer-free existence, and for that I envy them.

Steve's sister/my beloved sister-in-law is a six year survivor of a rare form of ovarian cancer which one of her doctor's says will invariably return (we're hoping and praying with all our might that they are WRONG!). She has been a wonderful touchstone, not only because we love her so much, but because she and her family have walked the path before me and Steve, and in fact are still walking it ... but even with her, I don't want to dwell on negativism in our discussions, because while we both have persistent clouds above our heads, it's a blessing when we can forget about the cloud and enjoy a glorious sunrise or a rainbow.

Those who know me best know that I'm a decisive, take-charge sort of person ... that I don't fare well with uncertainty or inaction. The hardest part for me about undergoing cancer treatment is in fact the waiting: for the next chemo session, for the next meeting with a doctor, for the next test results to come in. Every new discomfort that arises is an alarm bell: is the cancer relentlessly progressing, is it the sensation of cancer succumbing to the chemo, or is it even just the chemo itself that's causing the discomfort? Impossible to know.

I've already been told that my cancer is not curable, but at best, manageable. I refuse to ask questions of "how long" because despite statistics, there is no absolute correct answer for any given individual; each of us is unique, as is our cancer. I'm being practical: my affairs are in order, whether they need to be so now, five years from now, or sometime in between. But I want to focus equally on hope.

My hope is that with treatment I can push the envelope a bit, avoid debilitating symptoms for as long as possible, and spend as many days - weeks - months - hopefully years soaking up all the blessings that life brings.

Love,

Saturday, February 5, 2022

I've been doing a lot of reading; the books that resonate the most with me are those written by fellow cancer patients. There are also several really good books written by compassionate physicians, but only someone who has walked this path can really understand the emotional nuances of a cancer diagnosis.

Today, I would like to share something from this book:

Text in blue italics are quoted directly from Ms. Sabbage's book:

When I was first diagnosed, I noticed awkwardness in some of my friends when I told them the news: a look away, a slight stepping back, a wringing of fingers, a prolonged silence, a flush of embarrassment in their cheeks. There was a discomfort in my presence where previously there had been ease, and there emerged a respectful but fearful tentativeness about how to respond. It is a deeply understandable awkwardness. People want to help, but don't [always] know how. They want to speak, but don't want to say the wrong thing. They want to cry, but don't want to upset you. They want to retreat into their own shock and grief, but don't want to poach your pain. At first I [...] found it hard to understand why more offers of support weren't coming in, but gradually I began to figure it out: they needed me to help them help me. I was the one who knew what I needed [... and so] I wrote a list for all my friends and emailed it to them.

Here is my list, using Ms. Sabbage's list for inspiration:

• Expressing empathy, but not sympathy. Acknowledging I have cancer instead of avoiding mentioning it (but of course, we won't dwell on it :o).
  
  
• For friends and family who live nearby, reaching out when you are going to be out and about running errands to see if we might need help with something simple like a run to the post office, or to PetSmart, or to CVS.
  
  
• Providing organic vegan* meals, ideally freezable ... and please don't feel that you need to cook! There are lots of tasty options available through restaurants and whole foods grocers.
  HUGE THANKS once again to all of the friends who are already doing so, and to Lynn for coordinating the meal delivery schedule. If you'd like to connect with Lynn to join the "meals on wheels" team, please email her here. * Plant based, no added sugar, no meat or poultry (fish is fine), gluten free if possible.
  
  
• Remembering Steve and offering support to him too. This situation puts a lot of pressure on us both, and I don't want him to be forgotten. Men, in particular, can have a harder time reaching out to friends for support than women do, because they have been socialized to be the strong ones, the problem solvers, and are especially at a loss when they cannot fix what they desperately wish to.
  
  
• Texting before you call me so we can arrange a time to talk when I am most upbeat and energetic, and understanding when I'm too fatigued or otherwise feeling poorly to be able to connect by phone.
  
  
• Staying in touch with me via email and text to share your news and to check in ... telling me about your life ... happy news, fun photos, lighthearted joyful moments. You needn't feel guilty about having a wonderful day, for I am having them as well.
  
  
• Reaching out to me as a friend if you need support for something difficult that you are experiencing in your life at this time. I am still Jacquie ... I still care very much about each of you, and I can still listen and offer support. My being ill does not mean your lives/concerns are no longer important to me ... friendship and caring go both ways.
  
  
• Allowing me to feel whatever I'm feeling, including occasionally grief or fear. These emotions are appropriate to my situation, but don't mean that I'm giving up or letting cancer win. Far from it! It just means that I am human. The best way to deal with fear is to acknowledge and pass through it versus trying to suppress it.

Love,

Thursday, February 3, 2022

* IMPORTANT INFORMATION FOR ANYONE ATTEMPTING TO BECOME A NEW PATIENT WITH JOHNS HOPKINS *

I lost several weeks of valuable time in connecting with Dr. Fabian Johnston at Johns Hopkins because of a problem with their website. Depending on how you search for new patient registration, you can be taken to one of several different registration pages. I was originally taken to a page for Johns Hopkins USA, which appeared to be the correct place to register ... I applied, and in fact received a reply via email the very next day with forms to complete and return. Then, I waited ... and waited ... and waited. I finally figured out a way to call Dr. Johnston's office directly, only to learn that my application had neither been processed nor received by Dr. Johnston's office. His administrative assistant explained that the Johns Hopkins USA organization is a sort of clearing house for JHU, but is not located in Baltimore, and that JHU has gotten numerous complaints about patients falling through the cracks when applying via the Johns Hopkins USA site.

Here is the CORRECT URL for connecting with Johns Hopkins as a new patient requesting a consultation: http://hopkinsmedicine.org/patient_care/johns_hopkins_medicine_request_appointment.html

=====

I'm day 2 into my 7 day chemo cycle, and so far, no ill effects. Talking to a new friend Ellen, who went through the same chemo regimen I'm on, she said that days 3 and 4 were the hardest for her, which will be tomorrow (Friday) and Saturday. I'm taking anti-nausea meds prophylactically to hopefully stay ahead of the curve ... my appetite as of today is still good.

=====

What is on your bucket list? Do you have one written yet? For years, Steve has had many travel plans on his list, and I have had only one entry: to establish Catnip Haven. I'm a reluctant traveler, but every trip that Steve has instigated for us have turned out fabulously! Three cross-country motorcycle trips, travel to China, Chile, Italy, most recently the Galapagos Islands, and many more.

Receiving a diagnosis like mine really makes one think "what are we waiting for?" ... if you are close to retirement, can you retire sooner? If not, can you take a break (sabbatical) to tackle one of your bucket list items sooner vs. later?

We hope to resume our bucket list pursuits once I stabilize my medical situation ... for right now, staying close to home and focused on my medical care is important. Most of my treatments are taking place at the Inova Schar Cancer Center, which is only 10 minutes from home -- very convenient.

Many thanks to Helen for sharing this Snoopy wisdom with me.

Love,

Wednesday, February 2, 2022

Oliver Wendell Holmes: "What lies behind us and what lies before us are tiny matters compared to what lies within us."

Joseph Campbell: "We must be willing to get rid of the life we have planned, so as to [live] the life that is waiting for us."

I met gynecological oncologist Dr. Christiana Annunziata at the Inova Schar Cancer Center today, and really like her a lot! She is extremely knowledgeable and well connected regarding research on ovarian cancer taking place throughout the country; she is also very personable and collaborative, which is very important to me. No gloom and doom ... no talk about my cancer being incurable, or being advanced ... she seemed very confident in the proposed treatment plan (below). Dr. A. will for now be leading the charge on my cancer care.

I'm scheduled for four rounds of chemo; each round is three weeks long, and so I'll be going weekly on Wednesdays until April 20th. She said that after three rounds/nine weeks of chemo (March 31st), she wants to schedule my next CT scan. Assuming the CT scan shows progress -- that my cancer is no longer advancing (and perhaps has retreated a bit?) -- she would like to move forward with scheduling debulking surgery (removing inessential organs from the abdomen plus visible tumors on others), possibly with the addition of intraperitoneal chemo (PIPEC/HIPEC), for late April. She is happy to refer me to Dr. Fabian Johnston at Johns Hopkins to talk about HIPEC, and to involve Dr. Bicher, the gynecological oncology surgeon whom I met and liked several weeks ago, in my case as well.

After surgery, I would be placed on a second round of post-surgical chemo. By then, my genetic cancer assessment should be completed as well (it takes approx. 8 weeks, and was submitted by Dr. Cannon on January 20th), such that Drs. Annunziata and Cannon can perhaps jointly come up with a custom targeted medical therapy for keeping the cancer at bay post-surgery.

My first chemo session today went swimmingly well! We lucked out in getting a private room, and the nurses were excellent: very compassionate, very attentive, explained everything that was happening, closely monitored me for side effects, and also focused on our comfort as guests. The only noticeably effect so far is fatigue, but some of the other side effects typically lag behind a day or two.

The fast-growing normal cells most likely to be adversely affected by chemotherapy are blood cells forming in the bone marrow, cells in the digestive tract, reproductive system (no biggie there, as that is the site of my cancer), and hair follicles. Common side effects of chemotherapy include nausea, diarrhea, constipation, mouth sores, fatigue, hair loss, and anemia. I'm well stocked with meds to counteract the first four should they occur; will take lots of naps; am investigating chemo hats and potentially a wig; and will be getting blood tests weekly before chemo to monitor my red and white blood cell counts.

All in all, despite being a "cancer-focused" (vs. non-cancer) day, it was a good one!

Love,

Monday, Jan 31, 2022

Living for Today

Steve and I are going to start focusing on life one day at a time. I've usually done a pretty good job of that -- Steve's more of a traveler than I am, and so by definition he generally needs to plan our trips months if not years in advance. Now, however, it's essential for us to both to live for today, because cancer is a waiting game with a lot of uncertainty:

• Wait for chemo to start to see how you your body reacts, then learning how to counteract side effects as best as you can;
• Wait for interim lab reports to see if the chemo is too toxic;
• Wait for the first three months of chemo to conclude so that you can have another CT scan;
• Wait to see what the CT scan results tell us; etc.

The first two weeks after my diagnosis were extremely difficult, because I kept projecting fast-forward to a very unhappy ending. The only way to survive the mental/emotional challenges of cancer is by focusing on other things, good things, day by day.

A great day for me is pretty simple:

• Waking up with Steve (and perhaps a kitty or two?) snuggled up in bed with us.
• Enjoying a lovely cup of herbal tea while Steve and I plan our day together.
• A nice, long, hot bath (aka my "Aqua Office" ;o) spent texting good morning to friends, reading/responding to supportive emails from loved ones, or reading a good book on my Kindle app. Our newest cat, Little Man, is usually supervising.
• Researching/thinking about what to say in my blog to empower and inspire people to be the best advocates possible for their personal health.
• A day *without* a doctor's appointment ... a day in which I can focus on being a person and not a cancer patient.
• Weather permitting, taking a walk with Steve to enjoy fresh air and focused conversation.
• Connecting by phone with somebody special (but only when my mood is upbeat ... when it's not, best to retreat).
• Sitting in front of our fireplace with Steve to watch something funny or uplifting on Netflix or Amazon Prime while enjoying a wonderful meal from one of the many friends who are making meals for us (or "making them happen").
• Snuggling down to sleep with Steve (and at least one kitty :o) after reading in bed and texting good night to friends.

My hope is for us to have many, many more such days to come ... but Steve and I will savor them one at a time.

Love,

Saturday, January 29, 2022

Today's blog is meant to hit HARD about getting tested for BRCA1/BRCA2 mutations.

I found a very eye-opening website that talks about "Reducing Cancer Risk When You Are BRCA-Positive" ... the information that follows is excerpted from that site, but I urge my female friends-family-followers to read the entire article here.

=====

Experts know that women who are BRCA-positive are more likely than average women to get breast cancer and ovarian cancer by the age of 70 (I am 65). But how much more likely?

• Number of women overall who will get breast cancer: 12 out of 100
• Number of women overall who will get ovarian cancer: 1 out of 100
• Number of women with BRCA1 changes who will get BREAST cancer: 57 to 69 out of 100
• Number of women with BRCA1 changes who will get OVARIAN cancer: 40 to 59 out of 100
• Number of women with BRCA2 changes who will get BREAST cancer: 49 to 55 out of 100
• Number of women with BRCA2 changes who will get OVARIAN cancer: 17 to 18 out of 100

From Jacquie:  Bottom line on the math: breast cancer risk jumps from 12% to anywhere between 49% and 69% with a mutation -- a factor of 4x - 6x -- and ovarian cancer risk jumps from 1% to anywhere between 17% and 59% with a mutation -- a factor of 17x - 59x.  Sobering.

It's clear that having a BRCA change makes a big difference in the likelihood of getting one of these two cancers, but of course it's not 100%. Since no one can predict who will or won't get cancer or when, medical experts suggest that all women with BRCA changes take steps to prevent cancer.

=====

The rest of the article goes on to talk about steps that can be taken to lower one's risk of getting either type of cancer, but some of them are fairly significant steps -- e.g., having your breasts removed (mastectomy) or your ovaries removed (oophorectomy). Annual mammograms are also crucial in monitoring for breast cancer, but sadly, there seems to be no ovary-equivalent screening exam to a mammogram as of yet. (I will continue to report any research findings that I come across in my blog.)

MY MAIN TAKEAWAY: Please consider BRCA1/BRCA2 testing for yourself and loved ones, but also make sure you have a caring and competent physician to talk through the outcome with and to help you plan for how to wish take action if you test positive for either mutation.

I did not have such testing earlier in life (I was unfortunately ignorant to the importance of doing so), and so I can't say for certain that my cancer arose because of such a genetic defect or for some other reason. Had I known I was BRACx positive, I would have most likely had an oophorectomy if not a complete hysterectomy years ago. I will pursue such testing if for no other reason than to continue sharing my experiences with others.

Please don't wait! Your health is your #1 priority ... schedule your next annual mammogram NOW and please schedule your test for BRCA1/BRCA2 NOW, and encourage loved ones to do the same.

Love,

Friday, January 28, 2022

So many things going on ... so much to update everyone about!

Here's a brief summary of where my treatment stands:

• I go in for a chemotherapy orientation session on Monday 1/31. That's where I will find out what I might expect from chemo, what meds I will be taking to help alleviate side effects, etc.
  
  
• I have my first of 12 weekly chemo sessions on Wednesday 2/2 from 8 a.m. - 1 p.m.
  
  
• I have my first meeting with Dr. Christina Annunziata, gynecological oncologist, on Wednesday at 1:30. Dr. Annunziata directs clinical operations for the Women's Malignancies Branch of NIH's National Cancer Institute - Center for Cancer Research, and oversees chemotherapy for ovarian cancer patients at Inova's Schar Cancer Center.
  Learn about Dr. Annunziata's work here
  
  

LAUGHTER:  On a totally different subject, Steve and I discovered an amazing comedian, Russell Howard, and watched a two part Netflix special entitled "Russell Howard: Lubricant." The first part is a stand-up performance by him, with the subject matter being both hilarious and very, very moving; the second part is a documentary of how his devotion of bringing laughter to the world has been impacted by Covid -- also incredibly moving. Here are two of my favorite quotes from his stand-up performance:

Laughter is the lubricant that makes life liveable ... laughter is a musical instrument that every one of us can play ... it travels across borders, and there is no accent to laughs ... it's ours. [... Laughter] can connect us, and little tiny moments where you provide a laugh for someone else, they are f***ing vital.

Nobody dies until [their] memory does, and every moment has the potential to become a memory.

Please watch on Netflix:  Russell Howard: Lubricant -- please drop me a note to let me know what you think of it.

Love,

Wednesday, January 26, 2022

Sincerest heartfelt thanks from both Steve and me to all of the wonderful friends and family who are supporting us in so many ways: through preparing and delivering lovely home-cooked meals, sending cheerful, loving messages via text/email, calling to check in, and offering help in a myriad of other ways.

As I get ready to post today's blog entry, it's hard to believe that three days have passed since I last posted. For the first few days after launch, blogging was my lifeline ... my way to try to make sense of the madness that had descended upon Steve's and my lives so very suddenly by putting it into words, and to keep our many loved ones updated without having to repeat the same sad news over and over again.

These past few days were particularly difficult for us both, and I was struggling to find words to share in my blog that weren't all about fear, helplessness, hopelessness.

I had a blog post ready to go yesterday morning, but it didn't quite make it to publication. So much happened yesterday, however, that I've decided to start from scratch ... tossing yesterday's post away ... writing this anew.

I had an amazing first phone conversation yesterday with a wonderful woman named Ellen, who shared her story with me with a completely open heart and a sincere desire to help me. We talked for over an hour -- way too much information to share in a single blog -- but perhaps the most important thing I learned about/from her is her role with and service to the Ovarian Cancer Research Alliance (ocrahope.org):

Ovarian Cancer Research Alliance (OCRA) is the oldest and largest ovarian cancer charity in the world. Incorporated in 1994, OCRA has raised over $110 million in our quest to end ovarian cancer. As the largest private funder of ovarian cancer research, OCRA is also the only ovarian cancer-dedicated voice on Capitol Hill continuously advocating for hundreds of millions of dollars in federal research funding provided by the National Cancer Institute and Department of Defense, as well as for related health policies that will benefit patients and survivors.

OCRA believes in a 360 degree approach in our efforts to eradicate ovarian cancer, so in addition to our research and advocacy, we also educate healthcare providers to ensure the earliest diagnosis possible through Survivors Teaching Students®; support patients with a peer-matching program in hospitals and online (Woman to Woman); convene the oldest and largest annual Ovarian Cancer National Conference®; train interested individuals to become effective advocates at both the state and federal level through the Advocate Leaders program; and unite grassroots ovarian cancer organizations through membership in our Community Partners.

Thank you, Ellen, for your newfound friendship, and for your dedication to fighting ovarian cancer ... I'm looking forward to volunteering with OCRA under Ellen's leadership once I get a bit further along in my cancer treatment "launch."

As to my treatment "launch," I received a call from Dr. Timothy Cannon, who has been shepherding my cancer-related diagnostic appointments since I was referred to him on January 10th, the same day that I was diagnosed. Dr. Cannon is a lovely person and incredibly talented physician, and had the dubious honor of breaking the exceptionally bad news to Steve and me about my diagnosis a week ago, in person, in his office.

His call to last night was of a much different nature ... we were able to speak more comfortably, on a personal level, with the ice having previously been broken (more like SLEDGEHAMMERED ;o). While still primarily a discussion about my illness, I received news that I can actually take action on, breaking me out of the dreaded limbo state.

My biopsy results confirmed what we were both expecting: a diagnosis of ovarian cancer -- of this type, specifically:   high-grade serous ovarian carcinoma

Is that good news? No -- no cancer diagnosis is good news, especially about an advanced stage of an aggressive cancer -- but there is good news to be gleaned from the bad, namely:

• My type of cancer is the most common of all ovarian cancers, and hence is receiving the most attention by the research community.
  
  
• My type of cancer is known to be initially responsive to chemotherapy -- it can't be cured, but it can be knocked on its A** and potentially held at bay until a different treatment (e.g., surgery) might be appropriate.
  
  
• Dr. Cannon is a gastrointestinal oncologist, not strictly speaking appropriate to be my primary care physician, but he is ALSO the clinical director and moderator of the weekly Molecular Tumor Board at Inova, which matches patients with targeted therapies based on molecular diagnostics.
  Learn about Dr. Cannon's work here
  
  
• Dr. Cannon has already requested that my cancer tissue be submitted for genomic analysis -- a fancy way of saying that it is going to be studied to determine my unique genetic cancer make-up, in order to see if there are any leading edge genetic/molecular protocols on the horizon that might be brought to bear in my case down the road.
  
  
• Even though I'm not his typical patient (he specializes in GI/stomach cancer), he said he'd be happy to remain a member of my medical team.
  
  

Thank you, Dr. Cannon, for your compassion in caring for me, and for your dedication to helping each and every one of your cancer patients conquer their disease.

With so many questions answered (and with the help of Xanax ;o), I got my first full night's sleep in weeks.

Love,

Sunday, January 23, 2022

Today's blog is about hope, for we all need hope to keep us going.

One's hopes must be realistic, so that we can fully embrace them without a whisper of doubt in our ear.

Hopes will undoubtedly change from time to time, as new information presents itself or as we grow to seek different things.

I want to share my current hopes with you all now.

• I hope that, while there is no cure for my disease presently, I can at least receive the best targeted treatment to prolong my life with quality. I want to extend the time that Steve and I have together to love and support one another; to love and be loved by friends and family; to enjoy our precious kitties; and to have time that I can use with purpose, to do what I can to make the world a better place. I have been doing so since 2013 through Pets Bring Joy, which is now in the capable hands of dear friends to oversee day to day, and so for now, I seek a new and different cause to give me purpose, most likely related to cancer awareness and helping others in coping with the disease. (To my PBJ friends: I haven't given up on Catnip Haven either! Just not up to that big an undertaking right now.)
  
  
• I hope that I soon find a team of physicians to care for me that I fully trust, who will partner with me along my journey, and who will treat me with respect as a person, not simply a patient or a research case.
  
  
• I also hope that, if I can sustain my life with quality long enough, a new treatment may come along that is relevant to my disease. I am not counting on this to happen, but I am nonetheless hoping.

Please remember to cherish every day and spend it on what matters most, with those who matter most.

Love,

Saturday, January 22, 2022

I'm sending much love to all of my friends and family who are following my blog, and who are reaching out to me, or otherwise thinking of me. I very much want to connect with each of you at some point in person or by phone, but I'm still struggling with too much new information -- drinking from the firehose -- combined with too much uncertainty, to feel stable about my emotions and therefore my ability to connect in real time.

I welcome and encourage you to stay engaged with me via emails and texts ... hearing from you lifts my spirts; I just can't connect by phone yet in most cases.

Even (or especially) Steve and I, who have always been close and able to talk about anything to one another, have a huge challenge of sorting out how we communicate with each other about this, and how we attempt to get some joy and peace out of each day together.

No updates on my medical situation ... today's blog is all about awareness ... proactivity ... perseverance ... empowerment ... knowledge ... courage ... advocacy.

*** I urge all of my loved ones to get tested for BRCA1 and BRCA2 gene mutations as soon as possible. ***   MUST READ:   BRCA Fact Sheet

* CA125 tests not very useful in screening * - see: Mayo Clinic on CA125 Testing

I'm actively advocating for women to take responsibility for their health and to have frank discussions with both their primary care doctors as well as their gynecologists, and to tell them that they want to be proactive about screening for ovarian cancers. Especially if you are experiencing any abdominal symptoms (tenderness, bloating, cramping), make certain that your doctors don't merely focus on GI causes as they did with me ... press for a gynecological evaluation as well. The number of stories that I continue to run across about women who were diagnosed (as I was) with advanced ovarian/peritoneal cancers because symptoms were misinterpreted or dismissed by doctors is very, very distressing.

As Steve has always emphasized, everyone's #1 priority should be taking time for their health ... #2 is time for loved ones ... everything else comes after.

Love,

Friday, January 21, 2022

Today is, relatively speaking, a quiet day. No doctors appointments, no procedures, no tests. Hanging out at home with Steve and our kitties, trying to live as normal a life as possible, but with a huge dark cloud hovering overhead. I try to stay busy (distracted) by day; it's hardest to keep my mind from wandering to dark places in the middle of the night, when sleep eludes me.

Still waiting for the biopsy results that will definitively identify the specific type of cancer cell that is ravaging my body. Hoping to get those on Monday ... ?

I reached out to my internist today, and we had a telemedicine session so that she could prescribe something to help lower my anxiety. She has clearly been moved by my situation; she is now working with another patient, a 40 year old woman who is presenting with vague abdominal issues but normal CT scan; she expressed frustration at how little is available to screen for/diagnose ovarian cancer. I hope that her heightened awareness from my case will help this new patient.

Still in limbo as to who will be primarily overseeing my care, at least for the next stage of treatment: 3 months of weekly chemo, starting February 2nd. One possibility: Dr. Christine Annunziata, who is both on the Inova Schar Cancer Center Team and an investigator with the Women's Malignancies Branch of the NIH Center for Cancer Research. Here is an article about some of her work:

Conversation with Christina Annunziata

I'm hoping to meet Dr. Annunziata sometime next week to see how our rapport is; it's so important to my soul that I feel a kinship to her, that I can honestly believe she sees me as a person, not merely as a patient or, worse yet, as a study participant.

I haven't given up hope of involving Dr. Annette Bicher, the gynecolological oncology surgeon whom I met on Wednesday, in my case as well. Unfortunately, I was told that she is experiencing a very high case load and a staff shortage in her practice, such that she won't have the capacity to take me on; I will reach out to her again in hopes that I might persevere, as I felt cared for and comfortable in her presence.

I received a surprise call from my gynecologist, Dr. Cindy Kinder, who had just learned of my diagnosis. She couldn't have been more warm or genuinely concerned for me; she encouraged me to call her at anytime to talk. I will definitely use her as a sounding board and touch stone; she is well acquainted with Dr. Bicher, and said she'd place a personal call to Dr. Bicher if I wish to advocate for Dr. B. to take an active role in my case.

2022 is the Chinese Zodiac's Year of the Tiger, known for bravery and courage. Just a few short weeks ago, I was excitedly talking to PBJ friends about how 2022 would be the perfect year to pursue establishing our brick and mortar Catnip Haven Community and Adoption Center, which has been my dream ever since launching PBJ in 2013. Instead, the Tiger may symbolize my fight ahead; Catnip Haven will have to wait.

Love,

Wednesday, January 20, 2022

Another day, another devastating blow.

Steve and I met with a second oncologist today -- this was a GI oncologist, the doctor who has been orchestrating my various lab work and procedures since my diagnosis. The news he delivered was not what we wanted to hear: namely, that:

• My cancer is more advanced that we thought -- it has already spread into my chest, in particular my lungs;
• Because of this, I'm not a candidate for the Cytoreduction Surgery with HIPEC that we had previously hung our hopes on, and may never be;
• They are starting IV chemotherapy on February 8th in an attempt to stop the forward aggressive progress and *maybe* to push it back a few notches;
• If the chemo works, it will only be a temporary fix; the cancer cannot be eradicated, and will eventually return.
• Each time it returns, it will most likely be resistant to the previous chemo drugs used, and will require more intense chemo.
• At some point, when my quality of life is too impaired by chemo, it will become futile to continue. The question is, how soon will that be? No idea.

Needless to say, we are both reeling ... not sure what else to say for today, except that I MUST get the word out to loved ones -- women especially -- on how to hopefully prevent this from happening to anyone else.

Wednesday, January 19, 2022

Dear friends and family,

Thank you for caring enough to want to visit my blog.

This first post is going to be relatively direct (and for that I apologize), because it is being prepared in haste ... I want to communicate the basics of what is happening in my and Steve's lives before I embark on a series of medical appointments, spread over the next few days.

I hope that future posts won't be so much about "drinking from the firehose" for those of you who choose to follow.

It's amazing how a single day can make a dramatic difference in one's life.

On Monday 1/10/22, I was transformed from a person who was having vague and mild intermittent medical symptoms into a cancer patient struggling with a very serious diagnosis: Peritoneal Carcinomatosis. Complex, frightening words.

A short informative video explaining my disease by Jonathan Greer, M.D., Johns Hopkins Medical Institute: https://youtu.be/2KDS8TSQHMo

Of course, first came shock to both Steve and me; next came a whirlwind nine days of intensive research into both the disease and potential treatments; and unfortunately, that whirlwind is still in progress.

Today, the 19th, is another turning point day, because I'm having a biopsy this morning to determine the precise nature of my cancer. I will be meeting with two different oncologists -- one today and one tomorrow -- in the very first steps of trying to assemble a medical care team. I'm trying to strike a balance between hopeful consideration of best options and acceptance that there may be none.

My overarching reason for creating this blog, and for hopefully being able to continue it with for many posts to come, is to spare others, if possible, from the same fate.

One incredibly important point:

If ever you are dealing with vague medical symptoms that defy diagnosis ... if you've seen multiple doctors, and had multiple tests, and everything is said to be okay, but you don't have an explanation for why you are feeling how you are feeling, don't give up until you have a diagnosis.

Don't be afraid to appear like a hypochondriac ... don't let a given doctor push back at you to try to convince you that everything is fine. Seek another doctor: one who will be a true partner in finding a diagnosis, who will take your concerns seriously versus brushing you aside, perhaps because of an overly demanding caseload.

My symptoms began in March 2021: a few episodes of sudden onset vomiting and abdominal cramping for which numerous tests were performed (including an abdominal CT scan with contrast) that all came back normal.

After three attacks over a two week period, the symptoms disappeared as mysteriously as they started.

One random attack occurred in May, but I ignored it, and then I had eight months of "normal."

In mid-December, while on our trip to the Galapagos Islands, my symptoms resumed, but this time they didn't go away.

I saw my internist when I got back on December 30th. She said that my symptoms were beyond her scope to diagnose, and wanted me to see a gastroenterologist, but with the overload on the medical system due to Covid, I was having trouble getting an appointment. I begged her to at least start another round of diagnostics so that we would have something in the way of data to present to a gastroenterologist when I was hopefully finally going to be able to see one.

She scheduled a repeat CT scan identical to the one I had in March, but the outcome was decidedly not identical: a diagnosis of advanced, serious cancer.

I hope that I will be able to continue this blog, both to keep Steve's and my loved ones updated on our journey, but also to advocate for you to be a strong proponent for your own health, no matter what it takes ... the stakes are far too high to do anything less.

Love,