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Hello Family and Friends. What a week I have just experienced. You should be chuckling at this point because as most of you know I'm not a big fan of technology or spending time on social media type sites. Through this turn of events it seems the universe is determined to school me otherwise. Thus, I begin a more public life on a generous website created by other survivors, that now bears my name, and for the purpose of sharing my journey through this diagnosis and back to full health.
So what happened?
Simply put I was running along at my usual high tempo of diverse days filled with all the fun things I enjoy in this retired life when on a Wednesday morning (June 20th) I noticed I did not have an appetite ~ a sure sign that something is not right with me! I had been experiencing a sensation of fullness in my abdomen for about a week but did not find it particularly remarkable nor uncomfortable so I just kept charging along. No appetite; that was cause for pause. By Thursday night I felt rather poorly and noted I needed to call my doctor in the morning for a visit. The visit happened, and some labs were ordered with the suggestion that perhaps my gallbladder was acting up. The PA added if I felt worse to consider visiting the emergency room at Palomar Hospital as they would be able to provide the same tests he ordered for Monday. By Friday night it was apparent what ever was failing was gaining momentum. I visited the ER on Saturday morning.
After the ultrasound on my gallbladder they sent me up for an abdominal CT and another ultrasound of my lower abdomen. Following those tests I was admitted for more testing. I guess if I had ever been sick with anything more important than the flu in my life, I might have caught on by now that something bigger was up, but I didn't and I found myself distracted by all the attention, the room with a great view on the 7th floor, and ROOM Service from dining services, really? What a lousy time to not have an appetite! If not for all the bustling around that is part of the hospital experience, one would think this was a really nice hotel. Great room, view, food service; I digress.
Seriously though, I cannot say enough nice things about the care and service I got at Palomar Medical Center in Escondido (the new hospital on the hill) the entire staff took really good care of me.
Saturday afternoon the attending doctor came by to tell us that the testing eliminated concerns about the gallbladder but all indications pointed to ovarian cancer at stage 4 that had metastasized into the omentum.
Hmm, that was certainly not the news I was expecting to hear.
Kat and my sister Kristen were with me so we asked a lot of questions and after the doctor left, we let the news soak in. More tests were ordered for Sunday and I got scheduled for an abdominal drain on Monday. Several close friends came to visit me at the hospital on Sunday which greatly helped to relieve the mounting anxiety and productively pass the time. Sally, Connie, Kristen, Susan, Audrey and Kat (who slept on the hospital couch for two nights), I am very grateful for the time you spent with me, thank you.
They released me Monday afternoon to go home and wait out the test results with orders follow up with my doctor on Friday.
Anyone that has walked this path already knows intimately the crush of emotions and unending string of questions that come to mind. Given all that we know in modern medicine it seems improbable that something this life-threatening can just come on so quickly.
I have come to learn in the past week, I had a very classic presentation of ovarian cancer; fluid in my belly, coupled the abdominal pain (that I now have) and fatigue. I could not have caught it any sooner because, no kidding... There is no test for ovarian cancer.
This cancer goes undetected until it has often metastasized and one then becomes symptomatic.
Since this is a sharing site I have to tell you that this may have been a record for me in the not-eating-anything department. From Wednesday until Monday when they finally drained my abdomen (Interventional radiology doesn't work weekends) I didn't eat. The nurses kept hounding me for a poop report that I just could well, not produce. The drain experience was fascinating, the staff hilarious, and I can say with confidence that the liquid contents of my abdomen resembled a rich, nut brown ale complete with a modest foamy head; very similar to a past favorite adult beverage known as Alaskan Amber Ale. The best part of the whole Monday experience was once they relieved the pressure off my belly, my stomach released itself from the crush of fluid like an unfolded origami project and my appetite came roaring back.
Hello old familiar friend! Up to my room they wheeled me, out of that nasty hospital gown into my jammies I went, on came the cartoon channel, and "Hello, room service?
One order of pancakes, scrambled eggs, and hot chocolate please!" A comfort food indulgence while I waited to be discharged, heavenly.
All the additional hostipal tests supported the initial diagnosis. We saw my family doctor on Friday, June 29th and went over the test results. No new news but at least we have documents to book appointments with specialists. Kat spent the week setting appointments, researching websites, fielding emails and calls while I started reaching out to people I knew with experience in these matters. We launched a plan.
A very special thank you at this point for several people who launched right out front with us confronting this challenge:
Kat's Mom who rallied a massive network of Prayer Warriors out of New Jersey, and my family who fired up the West Coast and Mid-West believers.
Liz Arbogast, my former work partner who is an ovarian cancer survivor who took my call while I was still sitting in the wheelchair waiting to be picked up from the hospital. She immediately (and speaking in a language I can totally understand), put the whole situation in perspective. This is a trusted voice of experience who was able to answer every question we had and slashed my anxiety by about 75%. Over the past week, Liz has become an invaluable partner to Kat and me in navigating the next steps, providing us with information, resources to contact, and moral support. Thank you Liz.
Likewise, to my former Navy Diving Commanding Officer (1984), and cancer survivor Ray Mckewon who has provided me with very specific information regarding immunotherapy that may be available through UCSD in conjunction with the more traditional approaches of surgery, chemo and radiation. Ray, you continue to positively influence my life 34 years after I had the opportunity to work for you. Thank you.
Michael Williams' family members Matthew Sutherland and sister Bonnie who are making calls to contacts at UCSD that may be able to guide me to, or treat me with the cutting edge therapies being employed there.
The next doctor appointment is Friday, June 6th with the GYN/Oncologist/Surgeon in Palm Springs. She successfully treated and continues to support Liz.
We anticipate having a treatment plan and possible surgery date when we leave from that appointment.
We are approaching this like a military operation (knowing us, what else, right?)
We have identified the common enemy, are assembling a team, have rallied support and resources,
We have established a new email for all communications related to this experience: TeamTeri@icloud.com,
this Caring Bridge website for you to be informed,
Kat is the Chief of Staff, handling all aspects of the mission and our daily life freeing me up to meet my obligations, research, rest and communicate as I am able.
Most of all she is supporting me fully so I can focus on my part of the mission: following the prescribed protocol and getting fully healthy.
I will endeavor to post updates as we go along so, "Watch this Space" for updates!
Thank you for everyone who has reached out already, sending well wishes and making offers to help. We will very likely need you in the coming months and just knowing you care enough to call, text, email, share or post means a lot to us.
Kat is at my request handling much of the communication traffic so please contact her at the email above for information, help with this site, and if I don't respond to my primary email immediately please don't be offended, just feel free to contact her to address questions you may have.
As I am fond of saying: Lean forward, Focus and Engage!
P.S. We have plans to cruise the Arctic in July 2019, I intend to be there.