To read Our Journal, Week 1 (Diagnosis) click here. Please share if you think these journal segments may help someone.
The second week of war on this disease is best described as a box full of slinky spring toys that have been shaken up and are completely entwined with one another. You think you know…no, you are absolutely certain of where you must get to but the road there is completely screwed up.
Kathy and I have discussed the responsibilities we each have in fighting this disease. Mine being to deal with the insurance, hospitals, finances, and setting of appointments. Kathy’s one responsibility, to beat this bastard into the dirt. We have always been a team and will continue being one.
We have also formed our own private support team…Team Fist-Bump. We have decided that this team is open to anyone willing to say a prayer, give a hug, fist bump, or send an inspirational message Kathy’s way. Join our team today!
The inspiration that led to the creation of this team comes from me and Kathy’s ritual of bumping fist rather than high-fiving. Our fist bump together a dozen times a day – every time one of us, or we as a team, has done something deserving of high praise. Our own special ritual! Amazing how something so simple can be so special and totally wonderful.
Friday, November 24, 2017 – Because the kids had already made plans for Thanksgiving, they devise a plan among themselves for a second Thanksgiving dinner, on the evening following Thanksgiving day. Danielle and Wolfie host the event at their home. The youngest hostesses, the grand baby twins, Isabella and Kathryn, are there to greet Lou and Katie, and then Kathy and myself as we arrive. These little girls, I fear, will have a new nick name for the rest of their lives. (Oma) Kathy has begun calling them Pill #1 and Pill #2, solely because of how much better they make her feel as she holds them, plays with them, or listens to their young laughter.
The evening is wonderful. Kathy and I are so very blessed to have so much love in our lives. We talk, we laugh, we love…simple things that are much more valuable today then they seemed two weeks ago.
Monday, November 27, 2017 – Kathy and I work a half day which gives me a chance to make phone calls in an attempt to get the ball rolling as soon as possible. Kathy and I have a list of questions given to us by Memorial Sloan Kettering. These questions are for the insurance/pharmacy company so we can learn everything about the coverage Kathy will have. During these calls I learn of a fantastic program by United Healthcare called The Cancer Resource Program. This program picks up any expenses not covered by the regular insurance such as co-pays. I immediately request Kathy be enrolled and an appointment for a phone interview with a nurse is made for November 29th.
Next, I call Memorial Sloan Kettering. Ismail, the guy I have talked to in the past is not available, but no worries. I speak to Matt about the Cancer Resource Program. He then tells me he is sending a request to Orange Regional Medical Center for all of Kathy’s medical records and reports. He goes on to say that once the biopsy has been done and the report complete, fax it to Ismail. I will also have to get the biopsy slides and bring them to our first visit at Sloan.
Tuesday, November 28, 2017 – We are 1 day away from the biopsy that should have happened last week, but was cancelled.
I call Memorial Sloan Kettering Cancer Hospital in another attempt at setting an appointment with them. With the daughters help, I had the names of two doctors at Sloan that we are hoping can head the medical team that will be formed in curing Kathy. Our plan is to set an appointment for Friday, Dec 1st, taking into consideration the biopsy would have been performed two days earlier and the results already complete. Once again I am told that no appointment can be made until after the results of the biopsy are in.
When calling them with my initial questions last week I was told the same thing. I’m not certain why I think it will be different this time. Perhaps it is because family has told me there is a way to get an appointment before the results are in; perhaps it is because I feel that they (the medical community) owe us for already having pushed the biopsy back a week; or perhaps it is as simple as me talking myself into believing that I might speak to someone new at Sloan who isn’t as knowledgeable on the admitting procedures of a new patient.
A DATE! That’s all we want!
Wednesday, November 29, 2017 – Kathy and I wake up to a warm embrace – there’s been a lot of hugs this past week. The day has arrived for the first step…finally!
Kathy is a self-proclaimed “Big Chicken” when it comes to needles, and knowing that there will be a long one inserted all the way into her lung today is causing a tremendous amount of stress. She’s a real trooper though and ready to get this step over and done with as soon as possible. You gotta love this woman!
At 8:30 AM, we arrive at Orange Regional Medical Center. We are both quiet – inner thoughts over-powering and tainting any happiness we might have felt at having this big day finally arrive. As we sit there waiting for the admission desk to call her name, Kathy’s phone texting activities increase once again. Danielle is unable to make it but staying in constant touch through her phone. Katie and Lou, who live much closer, show up with smiles – a welcome sight to us both.
Small talk is made, we register at the admission desk, and finally they call Kathy’s name. Me and Kathy enter the out-patient surgery ward together, as a team, Team Fist Bumpers. She is shown to room 39, a three-walled room with a bed and curtain that is pulled shut behind us to form the forth wall/door. Vitals are taken, then a 30 minute session of answering the nurses questions…and having the nurse answer ours’.
Two surgical nurses enter to prepare Kathy for transport to the operating room. We learn that the procedure will be done on a CAT scan where the Radiologist can guide the needle to the mass and snip off small samples of it. Other than a mild sedative being administered in the OR, Kathy will only be given a lidocaine injection to numb the site of the biopsy needle, she wouldn’t be put to sleep – fidgeting movements increase.
The nurses tell me it’s time for her to go and I must go back to the waiting room. I give her a kiss, tell her I love her, and am heart broken as I walk away from my love, unable to do anything to help her.
An hour later I am being escorted by one of the surgical nurses back to meet Kathy. I am happy to hear the nurse tell me that Kathy “really wants a cup of coffee”. So after we make her a cup we continue through the halls until I hear her joking with a nurse. I round the corner to see her in bed, smiling!
The procedure is absolutely painless she tells me…she didn’t even feel the lidocaine injection. A great confidence builder for all the doctors she is destined to meet in the near future! After she tells me this she goes on to explain how these two nurses proved to also be angels sent from heaven to do a job that not many can. As Kathy was instructed to turn on her side to begin the procedure, with eyes shut tight, she feels a hand hold her own. She peeks through her eyelids and sees one of the nurses. This nurse holds her hand for the entire procedure.
As a writer, I learned quickly that repeating the same phrases in a story are a surefire way to get my editor’s red ink pen into a scratching, circling, and zigging frenzy. Much like my English teacher use to do. I’ll just have to chance the criticism when it comes to telling you that the medical staff we have met thus far are angels in disguise, sent from heaven.
I explain to the nurse that Memorial Sloan Kettering wants me to bring the pathology slides from the biopsy with me on our first visit. She immediately calls the pathology department right there on the spot and repeats my request into the phone. The lady on the other end instructs me to call the lab this coming Monday or Tuesday for pickup details. I write down the contact’s name and number in my ever-growing notebook and promise to call. (This notebook has since been upgraded to a larger calendar/monthly/weekly planner. Invest in one and write down every appointment, summary of appointments, and I even started adding things needing to be done so I wont forget. The book is not going to be a waist of money, its actually worth its weight in gold).
The staff want Kathy to remain under observation for three hours. Katie and Lou come in and we all joke around while the time creeps by. When it is time to leave we all hug and go to our separate homes knowing that it will be a long weekend.
We are told the results will take 3 to 4 business days
Friday, December 1, 2017 – I take my lunch break at work and see an excited text from Kathy, “The results are in!!!! We need to be to Dr. Fruchter’s office at 4:30 PM!”
5:30 PM: Our appointment is delayed an hour but this is okay. We sit in the waiting room, holding hands. I try for corniness but its just not there at the moment. Danielle text us, requesting to be put on speaker phone while we hear the results. I am thankful. I already know there is a good chance that I will forget something said. It’s good to have family there to listen at such stressful times.
As the doctor escorts us to an examination room, I call Danielle and put her on speaker phone. The doctor faces us as we take our seat on the familiar examination table. He begins, “You have a cancer called Adenocarcinoma…”
Cancer that forms in the mucus-secreting glands is referred to as adenocarcinoma, according to Cancer Treatment Centers of America. Up to 99 percent of all prostate cancers, 95 percent of colorectal cancers, most non-small cell lung cancers and certain pancreatic and esophageal cancers are classified as adenocarcinomas.
I think he is interrupted at this point by one of us. “Is it small cell cancer or non-small cell?”
He said, “It’s a non-small cell type.”
I think he is a little taken aback by our exhalations and smiles. Our Son-in-Law’s mother died of a small cell cancer and we were praying it wasn’t the same. Not much better, but certainly one with better odds of survival, and of even greater importance, a type that can be operated on.
To help him understand our feelings of utter relief, we go on to explain how we were already prepared for it to be cancerous. We saw it as a blessing that it wasn’t one of the worst types. Also, we go on to explain to him that we have an army of prayer warriors from around the globe standing beside us!! We are HUGE believers in the Power of Prayer!
Next, we tell him where we will be treated: Memorial Sloan Kettering Cancer Center. I share a recommendation from Memorial Sloan that Dr. Fruchter order a PET Scan because he can probably get it done quicker than Sloan. Dr. Fruchter turns to Jill, his amazing nurse. She leaves the room to work her magic on the phone. A few minutes later she returns to say an appointment has been made for Thursday morning, December 7th.
The PET Scan is the test that will determine if the cancer has spread. We still don’t know what stage this bastard is in but we are certainly moving in the right direction to find out.
It’s time to wait for new knowledge…big knowledge! This is even worse than having to wait for the biopsy results. Kathy is imagining that the cancer is continuing to spread throughout her body as we go through these steps – each step seeming to be measured in weeks!
Time to wait again…