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Saturday, December 16 – 8:30 Am, I am at the window of the radiology department to pick up the MRI, CD’s in DICOM format showing Kathy’s brain. Dr. McFarland, at Sloan read the report created by a radiologist at ORMC, but wants to see the images himself and have a radiologist at Sloan create a second report.
The ladies at the window are getting to know me by sight. They wish me a Merry Christmas and lots of luck to Kathy.
Later that morning, Kathy and I head off to an old stone church up in the mountains to attend a “Celebration of Life” memorial service for Paul, Danielle and Katie’s father, and Kathy’s ex-husband. We are put in charge of the grand babies and seated in the last pew of this beautiful little church.
We were both nervous about being able to keep the babies from having a nuclear meltdown (with they are fully capable of doing:)), but, as Oma and Pops, we are ready and fairly confident we will succeed. Ten minutes into the service my lap is soaked by the little angel sitting on it. I quickly exchange babies with Kathy, who expertly begins changing the diaper of this little rascal.
Paul’s four daughters, brother, Brother-in-Law, and two Son-in-Laws give heart warming eulogies. He had good friends and family that will miss him terribly…but his legacy does live on!
The girls were fantastic. There were some excited screeches as they heard their mom, Danielle, give her eulogy, and waves from their little hands to Aunt Katie as she gave her’s. But with expertly timed lap-bounces, tickles, and gold fish crackers, Oma and Pops had a successful day.
Monday, December 18, 2017 – During my break at work I speak to Michael, the guy I had spoken to last Friday on the phone about making Kathy appointments for a consultation and bone biopsy procedure at Memorial Sloan.
He tells me Dr. Alago will be doing the procedure. We have a consultation appointment set for this Wednesday at noon. The bone biopsy procedure will be done this Friday. We will be given the time at a later date.
Tuesday, December 19, 2017 – Early this morning, while sleeping, I am awaken by Kathy’s crying in a dream – a dream that sadly, will not vanish when she wakes up. I’m heart broken and can’t get back to sleep. I get out of bed and begin my therapy – typing away on this journal.
Wednesday, December 20, 2017 – 10:45 AM, Kathy and I arrive at Sloan for our consultation with Dr. Alago. We are taken back to an examination room at 12:20 PM, and soon after, Sandy, one of Dr. Alago’s nurses comes in to take vitals and explain what Kathy can and can not do in the hours preceding the procedure. The part that doesn’t sit well with Kathy is “no coffee” that morning. She LOVES her coffee!
Dr. Alago comes in. A very friendly and compassionate man that takes Kathy’s hands when he senses that she needs human contact. I feel guilty because I can not put down my pen and pad. I can not afford to miss anything. Thank you Dr. Alago for temporarily filling in for me!
He goes on to explain that the biopsy will be performed on the ischium bone, located in the pelvic region. Dr. Alago will biopsy the largest of three locations within the pelvic bone picked up by the PET scan. The largest is about 2 cm, or the size of a peanut (outside the shell). He goes on to say that the results will take 3-5 days. which is fine with us. This means that Dr. McFarland will be able to explain them to us when we see him next week.
On the way out, Kathy stops by the Lab for blood work. When she is done she tells me to wright down Julia’s name. It’s the lady that drew Kathy’s blood and “a fantastic angel fist bumper,” as Kathy puts it. “I must remember to always ask for her!”
Thursday, December 21, 2017 – 6:00 AM, I am at work. I will be knocking off early, at 3:30 PM, so me and Kathy can drive to a hotel near Sloan for a nice rest, followed by a short, stress-free drive to Sloan in the morning for Kathy’s procedure.
I am a nervous wreck and can not control when my eye balls get wet. Every tool I look at, every form I am filling out, every part I am setting up to be machined, I see the same smile Kathy gives me when she calls me a jerk. These are the best ones for some reason!
At 7:25 AM, I sit on a step at the base of one of the machines I am manning. I open my journal, and for the first time ever at work, begin writing: “At work. Scared. I feel I’ve been lying to myself because Kathy is feeling so good. Reality check! Kathy has lung cancer that has spread to the lymph nodes and bone marrow of pelvis. I’m scared to death and can’t function to good @ work. I want a good cry but must remain Kathy’s rock. I’m sooo sorry Baby.”
Kathy’s day is no better. At 12:15, I go to break and see a text from her that she is leaving work. I call her and she is crying. I tell her I am leaving work now. At 12:20 PM, after letting my boss know, and having him tell me to “go, be where you need to be,” I leave.
At home, I call to make the reservation for that night at the Hyatt House. We think it is a beautiful thing they are doing by offering Sloan cancer patients a discount rate. Beware the SPECIAL rates offered by hotels located near Cancer Centers (I so hope the Owner of Hyatt sees this!).
When making the reservation I give them the Special Rate Code Sloan provided us with, and was given a price. Since this is the only hotel that we know of located within blocks of Sloan, I have no choice but to get this room. However, before I make it final, and just for shits-n-giggles, I ask for their regular rate. The regular rate is $20 cheaper than they charge cancer patients that are being told they are getting a special discount! When I voice my disbelief in this, I am told that The Hyatt’s prices fluctuate and sometimes fall below the contracted set price with Sloan. Really? Why not adjust the Special Code to be cheaper than whatever price your fluctuating price scale currently list? Memorial Sloan needs to tear that contract up. Sloan advertises the special discounts they’ve worked out with local hotels. Your only costing the people you claim to care about more money. And most can not afford it!
If anyone reads this that knows how to make them feel the humiliation I felt for all those families that actually paid $20 more under false pretenses, please let me know and I’ll be sure to do what I can. There are so many things broken in this country right now and one of the things that gets my goat the most is boardroom executives that sit behind large mahogany desks, devising ways to suck more money from the average Joe, while pretending to be average Joe’s themselves! Fluctuating prices my fanny, they know exactly what they’re doing! They just assume that we all take their words at face value.
4:30 PM, we are comfortably settled in our room at the the Hyatt House (The picture on top of this Blog is of Kathy in the suite’s kitchen), a short 2 minute, back road drive to Sloan. The cost is already forgotten. I am enjoying Kathy’s excitement at her first stay in a suite. I can’t tell you how many times I heard, “holly shit baby!” as she made her way through the place. It really warmed my heart to know she is so happy and comfortable where we are staying.
I decided then, that no matter the cost, she would unwind in this place, after the insane traffic infested drive, and before any treatment sessions.
Friday, December 22, 2017 – We arrive to Memorial Sloan at 10:30 AM and are taken to the change room at 12:15 PM. Just before we are to go through the doors to the women’s change area I am halted. The staff wants me to wait here so no ruckus is caused by me in there:)
Kathy comes out and we are led to a small room with a bed in it where Kathy will be prepped for the biopsy procedure. Tracy, one of Dr. Alago’s nurses arrives to insert the IV needle. Kathy, as always, closes her eyes, but I see that the needle appears bigger than the ones I’ve seen for previous procedures. We learn later that one of the drugs being used is thicker than in the past and requires a larger gauge needle. Once the IV needle is inserted, Kathy opens her eyes and silently says to me, “That hurt.” My heart breaks a little more.
A second nurse on Dr. Alago’s team, Sedrina, comes in. One of the first things she tells Kathy is, “I’m the nurse that has been known to climb in bed with a patient that is scared.” We love her right off the bat and instantly accept her into Team Fist Bump.
The anesthesiologist and Ricardo, the surgical technician come in to check some things and introduce themselves. The time has arrived for Kathy to be taken away for the bone marrow biopsy. I give her a kiss and head for the waiting room. This is such a nightmare.
2:25 PM, I am brought back to Kathy’s recovery room. She is groggy, sore at the site of the biopsy, hungry, wanting coffee, and ready to go home – not necessarily in that order! But, most importantly, in good spirits!
Kathy’s only stressful point of the procedure was when she heard Ricardo and someone else as they were discussing the insertion point for the biopsy needle. Kathy thought it sounded like they didn’t know what they were doing. When she voiced this through tears, Ricardo brought his face right in front of hers and said not to worry in the least, “This is our way of working together.” Kathy was calmed and then she slept.
Like all procedures thus-far, she can not speak highly enough of the people involved with helping her. From two days before, at our initial consultation, we learned from Dr. Alago’s nurse, Sandy, that the doctor’s entire team refer to themselves as “The A-Team.” Dr. Alago elaborated on this team even more by telling us how all the members constantly keep each other in check and double check each others work to ensure each procedure is done correctly. That’s exactly what we wanted, and needed to hear.
So, for Team-A, our utmost thanks and immense love for you all: Dr. Alago, Nurse Tracy, Nurse Sandy, Nurse Sedrina, the anesthesiologist, Surgical Technician Ricardo, Nellie, and Francea (Cocktail Girl). For anyone not listed please forgive me. I wrote down all I could but may have not heard a name or two as mind wandered, which it is very apt to do.
As we leave, we are able to solve an issue regarding Kathy’s FMLA forms that hadn’t been faxed to her work place yet. We are told that they have been faxed.
It is time to make the drive home.