The List

Dr. B.’s office called to let me know my CA-125 had decreased from 85 to 62 – a significant drop – after the radiation treatments for metastatic activity to my brain. I don’t recall all of my conversations with Dr. K., though I do remember her grin when she said, “this never happens” as we reviewed the clear CT during my last appointment.

We had done it again.

The following week I saw Dr. B. Given my recovery, response to the treatments and overall health, we decided to try a combination of chemo treatments considered preventative or life-quality sustaining. A year ago I was thought too sick to be a candidate for this.

Once again, I am here because my husband was paying attention, noticed the physical and mental changes in me and took action. It happened so quickly. We’ve all known or heard about a person who appeared in good health and suddenly can’t find their way home from the local Walmart. And yes, it can happen to you as well.

In November of 2021 Donna gifted me sessions with Tammy Billups (tammybillups.com) and more recently with Hana Mäkinen (endandafter.com).

Tammy is an animal communicator and energy/light healer and her work with Boo and me has answered a lot of questions and gives me more to think about. I am deep in gratitude for all she has taught me, for the peace she has brought me and helps me obtain and maintain for myself.

We recently had an excellent session with Hana who specializes in animal communication and prepares the human and animal for the loss of the other. I am still digesting that session and will write more soon about both Tammy and Hana and the resources they provide. A huge asset they each have allowed to me is confidence in myself when it comes to Boo. I more deeply understand our soul purposes and – I am believing myself (that’s written correctly), being okay loving my “self” and accepting love from others.

In our conversation Hana suggested I have information that could be helpful to others. Full of some “good feeling good,” I told my husband on the way home from Dr. B.’s if sharing what I am experiencing helps someone then that is something. When Hana told me this I felt it was a sign to go ahead and write out a couple of simple lists. I absolutely feel sharing information is one of the purposes of this experience and I am hopeful what I write makes sense.

If you are a woman over the age of 40, beware of the medical “it’s menopause/and or we’re all getting older” diagnosis. This is where every single issue brought to your doctor will be based on menopause, regardless if you have all your parts remaining or not. What an insulting, dismissively dangerous sweep-away.

Eventually a blood test checking my c-reactive proteins led to another test indicating Sjogren’s Syndrome which apparently was a false positive. Desperate to feel even remotely well, I accepted the rheumatologist’s findings. I began treatment of cortisone shots and other steroids, which initially masked the cancer until a CT showed it had metastasized to the peritoneal cavity.

Almost a year to the day I was diagnosed with primary ovarian cancer a CT of my brain showed metastatic tumors. Five pinpoint radiation treatments and a month full of heavy dexamethasone I am once again NED.

If only it were as simple as it sounds, reading that sentence.

Knowing what I didn’t know then, I would have paid more attention to various signs of ovarian cancer that share the cloak of menopause. I was experiencing many of these symptoms as early as a year and a half before my diagnosis:

• Swelling/inflammation in abdomen especially and it was hard – also the feet;
• Abdominal pain that continues to return;
• Not feeling hungry and not being able to eat though still gaining weight;
• Exhaustion for no apparent reason – and this is very different from being tired. Exhaustion is akin to having the flu where you just can’t even lift yourself off the couch or out of bed – exhaustion is not only physical it is highly mental. It is a very, very real thing – it is not in your head and you are not lazy – it’s impossible to function when you have this going on;
• Abrupt loss of short-term memory and distraction such as not being able to sit and read a book;
• Frustration and forgetfulness – more than mild and recurring;
• Lower back pain;
• Sleeplessness at night despite extreme fatigue during the day;
• Extreme leg muscle pain/restless legs at night.

Here is a short list of my symptoms once the cancer metastasized to my brain. All of the activity took place on the left side – the largest tumor tucked itself between the right and left brain, slightly to the left. I don’t have a timeline on this though we do know that the symptoms became intense the week before diagnosis:

• Inability to complete familiar and structured multi-step tasks such as making dinner, doing dishes, laundry, etc.;
• Leaving items in (very) odd places;
• Inability to sleep despite extreme fatigue;
• Anxiousness;
• Turret’s like outbursts;
• Loss of memory and immediate recall;
• Loss of appetite;
• Loss of interest in functioning or performing day-to-day tasks;
• Progression of the loss of the ability to “connect” one step of a duty to the next.

If you are experiencing these symptoms request a blood test test for C-Reactive Proteins (to indicate various immune-compromised issues and inflammation) and also test your CA-125 for inflammation related to ovarian cancer.

Steel yourself for all the reasons you will be given by a doctor you don’t need to have these tests. If your doctor will not submit orders for these tests, seek out a hematologist – preferably one that practices within an oncologic facility or request an appointment to explain your concerns to an oncologic gynecologist. There is no doubt any diagnostics are scary, frustrating and cause for apprehension though the time is now to address concerns that may be waved away as menopause or overall aging.

Lastly, I can’t stress the importance of getting treatment from a specialized facility. In 2010 I was diagnosed with a cancer ordinarily found in radiation treatment (which I had not had) and I ended up at what was formerly MD Anderson out of Orlando Regional Medical Center. After more surgeries than I care to remember, I was “cleared” in 2019. It is an amazing, large and very urban facility and I had great care though I am grateful to receive top-accredited care and treatment only thirty minutes from home this time.

Facility and staff are players you are going to get quite familiar with so if you have time to make decisions, it is always better to end up where you feel comfortable. It sucks to think about this stuff, though it is not a bad idea to carve out some time to familiarize yourself with what is available in your area and beyond prior to an emergency.