Team Fist Bump (#teamfistbump) is on a mission: These journals are being published, then shared by many in an effort to reach others needing help in understanding the obstacles suddenly thrust upon them by the diagnosis of cancer. Join our team today by sharing this journal, saying a prayer for Kathy, or giving her an electronic hug or Fist Bump along with an inspirational message in the comments. To read Our Journal’s Previous issues just click the issue you would like to see: Week 1 (Diagnosis), Week 2 (Biopsy).
Friday, December 1, 2017 – We return home after learning of the biopsy results in pretty good spirits. Learning that the cancer, Adenocarcinoma, is a non-small cell type, and therefore operable, is just the tiniest spark of good news we needed to hear in order to vent a good bit of the pressures that had built up. We are learning that with each venting of stress-pressure, more will be added at each bend on this path.
After telling Dr. Fruchter about Memorial Sloan’s request that he make the appointment for a PET Scan because of speed factors, his absolutely wonderful nursing assistant, Jill, leaves the room to make calls. She returns to tell us an appointment has been made for Thursday, December 7th. I then ask Jill if she can fax the results of the biopsy to Sloan which she does right then. We thank them all and head home.
Our next goal to reach is the PET (Positron Emission Tomography) scan scheduled for Thursday, December 7th. This scan, using some sort of radioactive-glucose solution is injected and when combined with a CAT Scan, will show if the cancer has spread. From there a stage can be determined. Of course, this new stress is a biggy. The kettle slowly begins to build pressure again.
Saturday, December 2, 2017 – Memorial Sloan Kettering has an online portal available for patients to aide them in all aspects of treatment. I enroll Kathy in MyMSK.org Portal using a Patient ID# provided by Ismail. On the portal, I see a list of all items we will need to bring to our first appointment or have faxed to them ahead of time. This gives me a new purpose and challenge which I instantly start working on.
The Portal is a great idea that should be used by all patients and/or caregivers. It certainly simplifies things by reading this stuff in the comfort of your own home. If you have any questions about what you have read then click the “Message” tab and ask away. It also allows you to get ahead of the ballgame and be prepared for your appointments.
Monday, December 4, 2017 – We decide to find a local oncologist to serve as an emergency backup, should the occasion ever arise where I need to get Kathy to a doctor quickly. We do not want to be caught with our britches down at any point along this deadly path…cover every base you can possibly think of! So, I contact the office of Dr. Gnanamba Kondagunta, MD. Her name was given to us by a nurse working the oncology unit at ORMC, where we stayed overnight a couple weeks back. An appointment/consultation with the doctor is set for Wednesday, December 13, at 1:15 PM.
Kathy has been experiencing a numbness to her left cheek and gums, similar to a Novocaine injection at the dentist office. We learn that this is a symptom of cancer so we decide to call Columbia University Medical Center (NewYork-Presbyterian Hospital) and Memorial Sloan Kettering Cancer Center to see which can schedule an appointment the soonest.
Because I have somewhat of a repertoire with Sloan (Ismail), I call them first. I get Ismail’s voicemail. I explain that I had the biopsy results faxed to him on Friday, as soon as we had received them. I go on to explain that because of the numbness to Kathy’s face and gums I would be calling Columbia next to see if they can see us sooner than Sloan. I tell him that I am at work, so call me there, have me paged, and give me a date for a first appointment. I then tell him I am calling Columbia and hang up.
I call Columbia and am passed around to 3 different people before I get transferred back to the first person I had spoken to on this merry-go-round. My break is over so I hang up. I call them back on my lunch break and am finally connected to the right person who tells me the soonest they can see Kathy is December 20th.
Ismail must have gotten my message and started working fast. He calls me back and informs me that he didn’t have a time yet, but is working hard to get us in on December 14th. I tell him to call me back with a time and hang up. A few hours later he calls to say the appointment would be at 12:00 noon, with Dr. Daniel McFarland. I tell him to make the appointment and we will be there.
The lesson learned here: The medical staff you meet anywhere will, in most cases, prove to be angels sent to help you or a loved one, but the administration is still run like a big cooperation. Getting the initial appointment never happens as fast as you would like, but if you tell them you are calling another fantastic treatment facility and going to the one that will see you the soonest, the train does pick up a little steam. Threaten their dollar if you must, this is for your loved one’s life!
My last phone call today was to the pathology department at ORMC to arrange a pickup time for Kathy’s biopsy slides that we would be bringing to our first appointment at Memorial Sloan Kettering. The lady there tells me to swing by that evening after work to pick them up, which I do.
Tuesday, December 5th – Ismail, at Sloan calls me at work. He tells me that Kathy’s insurance has contacted them to tell them that Kathy wouldn’t be covered because Sloan was out of network. He goes on to say that our appointment might be cancelled. I tell him to not cancel the appointment, that I will call the insurance company to see what kind of games they are playing. I had spoken directly to them the week before and they personally assured me that Sloan was in-network. Ismail tells me to slow down and it would be best if I spoke to Sloan’s billing department first. He connected me…
I take a knee beside the phone I am using because of a weakness and pain in my gut that has suddenly started. Kathy is trusting me to handle this end of business and I am scared to death that I have already screwed up.
Natasha, in billing, answers and pulls up Kathy’s info. She sees that Kathy is enrolled in United Healthcare’s Cancer Resource Program, and tells me not to worry, that this is a great program and everything is okay. She takes some information from me and officially enrolls Kathy for her first appointment at Memorial Sloan Kettering Cancer Center, on December 14th, 2017!
The evening before, while double checking that I had all required forms filled out to bring with us to Sloan, I notice that the biopsy slides they request us to bring should be “unstained”. The ones I picked up yesterday at pathology were “stained”! So, my next phone call goes back to the same lady in pathology who assures me she can have new slides ready for me. I tell her that we will be back to the hospital in two days anyway for Kathy’s PET Scan. I’ll swing by to pick them up while Kathy’s procedure is being done. She tells me that would be fine.
Wednesday, December 6, 2017 – After yesterday’s traumatic insurance scare I decide to get in touch with all involved insurance-wise. Timing my first break to coincide with business offices opening their doors for the day, I first call Dr. Kondagunta’s office to verify that our appointment is still on. All is good on their end, it was still a go! Next, for the same reason, I call Alice at the Cancer Resource Program. She assures me that Kathy is enrolled and that some paperwork has been mailed to us which will allow me access to Kathy’s information.
All components of this newly built, Fist Bumping Machine, seem to be working in perfect rhythm!
Thursday, December 7th – While getting ready to leave for Kathy’s PET scan appointment we discuss the idea of turning this journal into a book. I think it is a great idea and am excited as I tell Kathy that her name can be listed on the cover with mine as an author. We both feel that there has to be numerous people out there that can use this guide book as a therapy tool, which indeed, it has become for me.
Kathy and I arrive at ORMC around 8:30 AM for her 9:30 appointment. While checking in we learn that they have not yet received the prescription necessary for the PET Scan from her doctor’s office. We anxiously wait for Dr. Fruchter’s office to open so they can fax the script over. After a half hour it is done and we breath a sigh of relief knowing that we wont have to be delayed once again by having to schedule another appointment.
While seated in the waiting room Kathy shares with me that she doesn’t usually remember dreams, but the one she had last night kept her awake much of the night. She saw herself getting the PET scan and lighting up like a Christmas tree on the CAT image as the radioactive sugar solution, cluster at countless locations all over her body. This is caused by the cancer cells (glucose gobblers) devouring these intentionally injected snacks. What can I say? There’s no need to speak out loud that this is a distinct possibility that we both pray does not happen.
It is about this time that we meet Sam. Her full name is Samantha. She is a Lab/Spaniel mix and her job is Therapy Dog of ORMC. This dog couldn’t get enough of Kathy. It’s like Sam sensed where she was needed and homed in on this. Kathy cant get over the concern for her she can see in this dog’s eyes. And the gentleness it shows her. I have heard of these therapy dogs but never seen first-hand their value in a hospital.
At 9:25 AM, Kathy’s name is called and we are brought back to a quite room. At 9:45 AM, Kathy is given this radioactive glucose injection. She must remain as motionless and silent as possible, not wanting any muscles tensing up that might give false readings. Kathy busies herself by looking at pictures on her phone of Pill #1 (Kathryn) and Pill #2 (Isabella). Our grand babies for those that do not know.
About five minutes before they are going to wheel her into the procedure room I leave to run my errands around the hospital so I can be back before her procedure is complete. I go to pathology and pick up the “unstained” slides that we will need. I then call radiology to let them know I will need CD’s of both her CAT and PET scans to bring with me to Sloan. I get a voice recorder and leave a message. My work, or as much as I can get done is complete. I return to the waiting room and wait for Kathy.
About ten minutes later Kathy comes walking out with a smile. Another painless procedure for a very brave woman. My heart melts when I see her. We are told the results should be ready by the next day. We go home to wait…
Later this evening, Jill, at Dr. Fruchter’s office calls. She informs us that the results are in and request us to meet at Dr. Fruchter’s office at 930 the following morning.
Friday, December 8, 2017 – We both go to work like normal and tell our bosses that we will be leaving early for the results. Our plan is to return to work afterwards and complete our shift.
At 9:30 AM, we are escorted to the examination room where we take our seats and anxiously await the results. Dr. Fruchter enters and pulls up the PET scan report on his computer. He begins to explain that the PET scan shows 6 or 7, peritracheal and peribroncial lymph nodes seeming to be cancerous (Glucose Gobblers).
Our jaws drop.
All but one these lymph nodes are inside the chest cavity on the right side. Doctor Fruchter thinks Sloan will want to do a biopsy on the one outside of the chest cavity – at the base of the neck.
A real feeling of panic is beginning to settle in for Kathy and myself. Kathy sits there in stunned silence. I say the only thing I can thing of. “I need to get these results to Sloan immediately.” I explain that I already have the biopsy slides but never received a call back from radiology after leaving them a voice message the day before. I still need to pickup the image CD’s of the CAT and PET scans.
Jill says, “Give me a sec,” and leaves the room to shack things up in the hospital’s radiology department. God love that woman! She returns in 1.6 minutes. “Both CD’s will be ready to pick up in 45 minutes.” Thank you Jill!
As we are walking out, Kathy tells me she is going for the ride to Sloan with me. She wants to be there to keep me in check as I make my way through the chaotic traffic you find so close to New York City. Probably a good idea considering the way I was feeling at the moment.
We each return to work to explain that we are done for the day, which gives radiology the perfect amount of time to prepare the CD’s I will be picking up. In the radiology waiting room I call Sloan to inform them that we will be delivering the slides and CD’s within two hours. I am given a contact name and where to drop them off.
Thirty minutes later, two scared Nascar fans are heading south on 17. No worries though. Kathy has an uncanny ability to keep me calm. Occasionally, she had to grab the “crap-strap”, but for the most part the drive was legal.
The mission is accomplished. We return home, eat dinner, sit quietly, and discuss the two doctors we would be meeting with next week. Our local emergency back-up, Dr. Kondagunta, and Sloan’s Dr. McFarland. Both highly qualified oncologist. They will give us more answers and take away the confusion we felt at the moment.
Unfortunately, because we are publishing this piece a week late, I can tell you that these doctors will see things on the PET Scan that cause even more fear. The stress is horrible.