Unable to work yet missing her peeps…what is next?

Hello and thank you visiting Sarah’s site! I hope 2022 brings you peace and gratitude for TODAY, as NOBODY is guaranteed tomorrow.

I am creating this site for our Sarah with an H. She is a nurse, pickle ball player, mother of 2, daughter of 2 and my fiancé. Hopefully, together we can help her manage the unfathomable and incomprehensible news that her malignant and incurable braincell eating Astrocytoma brain tumor cancer hath returned essentially ensuring her an early, premature and unfair departure from this thing we call life. (RIP Prince!)

In the beginning of January 2022, unless told, very few would know from hanging with Sarah that she has terminal brain cancer. Incredibly and thankfully after 2 Craniotomies, she is still with us and that says a ton for modern medicine. For those of you lucky enough to spend extensive time around Sarah, you may notice a missing word or two or a misplaced cup of coffee or miscalled score in pickle ball (I have never done that!) but physically, Sarah is so extremely grateful that she has been able to continue to work, run and play (pickle ball), unlike a number of acquaintances that she has encountered in her brief but yet excruciating 3 year old cancer journey. Now, unfortunately, she faces her biggest challenge yet…RADIATION.

After her consultation and subsequent tests and appts, (yet another MRI, Radiation Helmet Fittings) the next 6 weeks will involve a DAILY trip, M-F, to the radiologist where her brain will get radiated with 50.4 Gray(apparently Gray is the way to measure Radiation) After 2 craniotomies, additional surgery is no longer an option given the DIFFUSE nature of her particular tumor. That leaves radiation as the only explored option remaining. Add the tricky location of the tumor and the known and unknown effects of radiation, we say our prayers and keep our fingers crossed that this is only a 2-3 month ordeal with NO, NONE, ZERO life altering side effects.

It is the fear of the unknown that is so destructive on Sarah! And admittedly, me as well. Way more destructive than the actual brain-cell eating tumor... so far.

Here’s how it started…

It was Sunday, 5:00pm of Thanksgiving weekend, 2018. The Christmas music danced quietly throughout the house(Xmas music is not high on Sarah’s play list) as decorations had begun to emerge from a long summers’ slumber. THUD! I was downstairs in my office and heard that THUD but thought nothing too much of it as Sarah was just moving heavy containers of Xmas things. Twenty or thirty minutes later and hearing little noise from above, I eagerly head upstairs to see the seasonal transformation only to find Sarah making the bed with just a comforter and no sheets. Hmmm! Quizzically, I gaze at her from across the bedroom to see what looks like a really bad job of applying lipstick around her lips and cheek. Appearing more than a trifle bit odd, I approach her closer only to see a completely disoriented Sarah with dried blood smeared on her face and an abrasion or wood-floor burn on her chin showing just a faint hint of unripened strawberry colored flesh . I am now incredibly confused. I sit her on the edge of the bed and try to ascertain the situation. My inner CSI activates.

What has transpired from that evening on was only stuff you hear about, read about and see on tv. Social media is full of these stories filled with heartbreak and bleak diagnosis and often after hearing of these stories, does my mind say "whew, glad it wasn't me." With the adrenaline flowing, I am now needing to take on Sarah's customary role as nurse and figure out our next move. I hastily call Sarah's nurse friend Trisha and am advised to either call 911 or bring her in to Urgent Care. Sarah is becoming somewhat coherent, so I felt calling 911 was overkill. I decided to rush Sarah to urgent care which was 10 minutes away. I drove it in 5…knowing that if I get pulled over I am not stopping until we get to Urgent Cares' front door. I scurry hurriedly to get a couple things and whilst holding onto the disoriented one, we make our way to the car for the longest car ride that has forever reshaped our lives. All the while, Sarah continues to ask me the same questions over and over again further telling me something is not right.

Fortunately, we found Urgent Care somewhat desolate and were admitted immediately. Not only were we whisked into the Urgent Care admit room but just as quickly we were rushed into the Emergency Room were within seconds a plethora of caregivers were bustling about all in concert with the lead doctors orders. IV's were started. Blood was taken. Pressures and pulses became monitored and fluids were flowing as the team scrambled to diagnose this seemingly fit, healthy 50 year old beautiful woman with very little medical history of note. After the initial flurry of questions and observations and treatments, she gets carted off for a CAT scan. As I sat there alone in this massive emergency room, although not hurting like Sarah, I have so many thoughts spinning in my head like a tilt-0-whirl ride at Valley Fair that always made me puke.

Sarah arrives back into our room and has a crushing headache which they try to help with injections. A most curious female doctor walks in with the question, "Have you had any head trauma lately or ever, such as a car accident etc?" We reply no and she then further suggests an MRI. So off they go again for what seemed like forever but I am buoyed by the fact that upon her return from each test, Sarah is returning to her more normal lucid self. Now, the formerly somewhat jovial doctor, returns with a completely different look on her face. A more somber vibe exudes her stride. She has the results of the MRI and we are told there is a large mass that appears on the right rear quadrant of her brain, near her ear area. Thankfully, they tell us it appears to be a cyst but a large cyst nonetheless. We are ordered to follow up with her primary doctor asap…as in tomorrow! Still reeling from the events that unfolded, we are discharged and dismayed. We have some answers but as much as we put our hope in the cyst, something still isn't sitting well with us. Why the collapse? 

After a few doctor appts, Sarah was told that she does not have a cyst but rather a tumor. And she has not only 1 but 2 tumors and one is the size of a baseball nestled neatly within her brain. The gravity hits me like a 99 mph high and tight fastball.

Now what? I reach out to both our neighbor friend, Dr M and family friend Dr H, looking for the best brain doctors available and both doctors, whom are at the top of their respective fields suggested Dr Nagib. I've been told they even called his personal cell phone to ask him to take Sarah's case over the weekend. For this, I am extremely grateful!

Incredibly, we get a meeting set with Dr Nagib. After a battery of tests and the results, I remember so vividly him asking what we had on our schedule in the near future. Puzzled, we look at each other...Oh, just Christmas and all that goes along with that but no real travel plans or other can't miss events. "Good" he says, then we will operate Wednesday. HUH? He literally tells his nurse to clear his schedule for Wednesday and assemble my A -Team.

I cannot fathom what Sarah must be thinking at this time, but I am a mess... behind closed doors, of course. Can't let my feelings show as I need to be her Rock of Gibralter and get her through this. Nary a word was uttered for a considerable amount of time as we departed the Dr’s office.

Apparently, Christmas will wait. More tests, a final MRI and a pre-op physical occur in the following days leading up to surgery. Potentially our last supper together, we dine the night before with Sarah's head partially shaved, which for a woman with long beautiful hair was a trauma in and of itself, and several fiduciaries or what look to be wintergreen Lifesavers(pun intended) stuck all over her head. We later learn that the surgery will take place within the MRI suite and so constant monitoring via MRI's will take place and the "lifesavers" are placed to realign her head in the vice in the exact position as the pre-surgery MRI so a comparison can be made to ensure complete redaction or removal of tumor number 1. I may sound smart now but oh how naive we were. Will she survive this surgery? Will she talk normally? Is it cancer? I keep the conversation light as possible knowing full well that life as we know it, will soon change.

I sleep little. Sarah sleeps less. The unnecessary alarm sounds at 4:00am and Sarah is the first to shower. We assemble our things and load up the car. Waiting first in line at Starbucks drive-thru, it's 5:00am. We get me my coffee as Sarah cannot partake in any food or liquid. Selfish, I know. We arrive at Abbott Northwestern Hospital on December 13th, 2018 at 5:28 in the chilly morning. With the admit process a lengthy one, Sarah is finally ready: Abbott de Gucci gown dawned, IV's established and all questions asked and answered. Several team members including the surgeon, anesthesiologist and our heart doctor neighbor friend have paid us a visit asking us the same questions over and over before she is wheeled out. I trail behind her with her bag of clothes and belongings for a weeks stay at the hospital. I literally think to myself, this very well may be the last time I see her alive or at least alive and normal. It's now 7:30am.

Helpless and alone by choice, I sit, stand and pace as the hours go by. It's nearing noon. Although I have been receiving text message updates from within the OR, I think they could have been a recording and everyone receives the same messages..."surgery has started"," going well", "closing up" and finally "meet dr in waiting room. " As I paced, I have heard several doctors reports to other families patiently waiting for good news. Most did. One family was asked to follow the doctor to another room, which brought alligator tears to the brink of my lids. Not now...be strong grasshoppa, I says to myself.

It's my turn and out walks Dr Naghib. I vaguely recall his brief words being somewhat cautiously comforting. The gist of my memory recalls that they got all of the tumor and she is in recovery but only time will tell. I am advised that Sarah is to have no visitors, and no visual stimulation including cell phone etc(which I failed to strictly enforce). I think to myself, well there are a lot of people that want to see her and this was supposed to be a recuperating joyous party of recovery. Those plans must wait. More waiting. I finally get a call from the nurse station and I am told Sarah will be on the phone line momentarily for a brief hello. And brief it was. I said hello and that we all love you and she mumbled some stuff and that was that. Now, more waiting until they get a bed available in ICU.

Another momentous occasion as I get the text that I can see her now. She is now in intensive care. I cannot describe how pained she looked. She is hooked up to a spaghetti of Iv's, monitors, catheters and every other device one could imagine. Sleeping in between prods and pokes by the team of nurses, she is in rough shape. Nausea is a battle. Ice packs on her face and head are continuous. A small chip of ice is carefully slipped in her mouth to sooth the inferno in her throat. After a bit of time, the nurse comes in and begins to administer the basic tests of who Sarah is, when she was born, where she is etc. To my dismay, she fails them all. I look around for an open bed as I feel ill. My once bright, cheery and vibrant finance cannot even say the most basic of things. I peer upwards in wonderment. The current of secret tears begins to flow nearly out of control.

As the hours click by in the intensive care unit, I am horrified by the screams of pain next door and cannot imagine what that poor guy was feeling. I think silently "at least Sarah isn't bellowing in pain". With the army of caregivers Sarah has at her bedside or within eye shot, I am told to go home and get some rest. I do.

December 14. I return by 5:15am and Dr Naghib stops in for a brief observation shortly thereafter and reiterates, no talking, no electronics, no nothing as Sarah needs to remain quiet to allow her brain to heal from the trauma of surgery. He does say to me outside Sarah's room that "everything looks great and they got all the tumor". Later that morning, Sarah shows signs of gradual improvement. She knows her name and some other basic facts. Progress not perfection. A lighter funny moment happened when the nurse asked Sarah where her daughter lived and she said "Duth". (Duluth) We still laugh today about that.

Fast forwarding through her recovery, we spend the weekend in the hospital and slowly she begins the long road of healing. We did not receive the much anticipated pathology report on Friday and given her condition, I was perfectly fine staying there in good hospital hands over the weekend. However, I feel terrible keeping friends, family and and loved ones away to minimize Sarah’s brain stimulation as this should have been a time of celebration. A time to celebrate that Sarah is alive. Few family were allowed in but Sarah was in terrible shape.

Monday morning brings Dr Nagihb's nurse in. I could tell by her posture she was not happy about the news she was carrying. I wanted to further gauge my inclination and said all cheery-like, "Good morning, how are you doing today?" As soon as she began to answer "well..." my heart sank. My hope was shattered. My false sense of optimism from what the surgeon said that "we got it all" simply compounded and exacerbated the doom. She went on to say in so many words that Sarah has that evil life changing disease called cancer. So many of you reading this have first hand experience with the emotions we were feeling when we heard those words. I was a perfectly healthy guy and THAT news brought me down to my figurative knees. I turn on my inner eye windshield wipers holding back the torrent of tears to appear strong and peer at Sarah trying to imagine how she felt? I could not!

So my fiance and I are now faced with the battle of a lifetime. She was diagnosed with Astrocytoma, grade 2 with Diffuse edges. Wowser!!! We have heard 2-10 years of life expectancy. Of course, we all could die tomorrow, so it is easy to say that we cannot look down the road too far as all we have is today. But good governor, what the hell? The analogy we were told by the oncologist is somewhat obscure but I'll repeat it for you. Given that the tumor does not have an easily defined edge, but rather a diffuse edge, the analogy is akin to a parade: most people sit along the route and watch the parade but there sometimes are stragglers that go down the side alleys off the parade route and may or may not appear. And it's those stragglers that may come back and unfortunately if they come back, they generally come back in a much more aggressive form reducing life expectancy even further.

Obviously, work has been put on hold for Sarah as she begins and continues to rehabilitate. Compounding her recovery is her license has been revoked or suspended for 3 months. Why you ask? Her seizure that started everything on that fateful November night, triggers the authorities to suspend her driving privileges and now causes her recovery to be dependent upon friends, family and me to get her to all of her meetings, appointments and rehab sessions.

Fast forwarding several months, Sarah is rehabbing nicely and slowly begins to work her way back to being the popular nurse that patients request. Her attitude expectantly is up and down: feeling good one day, then the doom of a death sentence the next. Oh, how I wish I could trade places!!

Fast forward a year of slow but nice recovery and now it is time for the second tumor to be removed. Again, the same feelings and questions of “what if?” come roaring back?? With my neck freshly fused two weeks prior, Sarah's surgery occurs. This second surgery is less difficult and was a success. Sarah needs to learn how to walk again but after a couple days of hospital rehab, we are back home in short order. Rather expeditiously she graduates the walker and then the canes. With another month or so off, she progresses really nicely and is back at work quicker than before. Now, she begins quarterly MRI’s to monitor if any changes occur.

We all know now that the stragglers from the parade have returned and it is time to RADIATE.

Sarah and I want to thank everyone that has helped or offered help these last 3 years. Without your love, support, prayers, wheels and meals, I am not sure where we would be. In hindsight, however, I fear that the last 3 years was the easy part. It is so absolutely gut wrenching to see Sarah laying so quietly and peacefully asleep knowing that inside her head lies a monster: A life shortening, incurable, brain-cell eating monster.

It is here where you can help! If you have the ability to help Sarah out, it would be greatly appreciated. You and I have the potential to reach retirement age, whilst our Sarah with an H does not!

But remember, NOBODY, and I mean NOBODY, has a GUARANTEE of tomorrow.

Your continued prayers are a necessity. Your generosity is so very much appreciated. Your love keeps us warm!

God Bless Today

PS Radiation started January 4th, 2022 and glad that first day is over. So much fear of the unknown was removed. Now we wait for the side effects to kick in next week.