Page 2 of 3

OUR JOURNAL: Lessons, Love, & Fighting This Bastard Called Lung Cancer! Week 4-The Oncologist (December 8-15)

GoFundMe

https://www.gofundme.com/teamfistbump

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)Week 3 (PET Scan)

IMG_2069


Friday, December 8, 2017 – At 9:30 AM, we learn that the PET scan shows 6 or 7, peritracheal and peribroncial lymph nodes seeming to be cancerous (Glucose Gobblers). This new knowledge showing that the lung cancer has begun to spread is terrifying to us both. I think we have both been in denial of the seriousness of this common lung cancer. We have talked ourselves into believing that it can simply be removed with a few doses of chemo and/or radiation to zap it out completely. Terror has begun to creep in on our positive thoughts.

As I mentioned in the previous journal (Week 3 (PET Scan)), Kathy and I rush the CD images and reports of the PET and CAT scans over to Memorial Sloan Kettering within hours of learning about this new development. We are desperate to get the treatment phase of this disease started as soon as possible.


Saturday-Sunday, December 9-10, 2017 – We begin receiving early morning calls from Danielle and Katie, our daughters. Their father, Paul, has been rushed to the hospital because of respiratory health issues. He is in a bad way. The girls have been called in by that side of the family to be by his bed. We are asked to watch over Kathryn and Isabella, our grand babies.

Danielle and Wolfie drop them off and we are given a welcome distraction. These girls are wonderful and just what Kathy needs to take her mind off the troubles that have been haunting her. The babies seem to enjoy leaving their play area to socialize and give Oma and Pops a piece of their mind from our stairway, which you can see below.

 


Monday, December 11, 2017 – We are watching the babies again today. Around noon we receive a text informing us that Paul, Danielle and Katie’s father, Kathy’s ex-husband, has passed. It is not a good day. This is the father of Kathy’s babies, and a guy that is a large part of Kathy’s life.

It’s not long before Danielle, Katie. and Paul’s brother Bobby come by with our Son-in- Laws, Lou and Wolfie. I am very thankful for this. I was glad to see Bobby and the girls talking history with Kathy – a part of healing for Kathy, Danielle, and Katie that I am unable to fulfill.

Our hearts go out to Paul’s wife, Debbie, his four daughters, and brothers. He was a good husband, father, brother, and person. I will always be thankful to Paul for sharing his daughters with me so freely.


Wednesday, December 13, 2017 – Today, at 1:15 PM, is our first meeting with an oncologist, Dr. Kondagunta. She will be our emergency stand-by doctor should we need to bring Kathy to a local hospital for emergency care in the future. All images of scans and reports have been looked at by her and Memorial Sloan Kettering will continue to share all results with her as they are collected.

Kathy’s first question for her is if it will be okay to call her Dr. K? Kathy has trouble remembering her name. Dr. K is very friendly and says with a smile, “Of course.” A good opinion of her is instantly formed by both Kathy and myself.

After making certain that she understands her roll in Kathy’s treatment, the doctor goes on to explain her interpretation of Kathy’s reports and scans. She points out something we hadn’t heard before that shocks us both.

For the first time we hear an oncologist translation of the PET scan images. Dr. K noticed a few spots within Kathy’s pelvis where the glucose gobblers show activity. The Ischium bone to be specific.

We can’t come up with words as tears start forming in Kathy’s eyes. I just stare at the floor trying to absorb the news I had just heard. The seriousness of this has just shot up another level!

Dr. K goes over to Kathy and holds her hands as she realizes that this is the first time we heard this news. She ask Kathy if she is okay. She then sees me and ask if I’m okay. She’s human and we love her. After we get a grip on ourselves she starts giving us her recommendations for the next step which I start jotting down in my ever growing calendar book.

She recommends further molecular testing on the biopsy slides to find out exactly what we are dealing with. She also recommends a bone scan of Kathy’s pelvic region. Next, she recommends biopsies on the lymph nodes that show cancerous activity around the trachea. I write all of this down and promise to bring them up with Dr. McFarland, when we meet him the next day at Memorial Sloan Kettering.

Suddenly, out of the blue, Kathy says, “The cancer in my lung will no longer be called the bastard. She’s the bitch and had little bastards all over me.” So henceforth, the lung mass is the bitch and all the other glucose gobbling clusters the PET scan picked up on are known as little bastards. I think this is a very accurate way to describe the invaders in my wife’s body.

Dr. K wants me to send her a summary of each visit we attend at Sloan. She is on Sloan’s list to receive copies of all reports, but she informs us that it can sometimes takes 2 or 3 days for Sloan to fax these results out. She wants them as soon as possible so I promise to do this. She also informs us that if we ever need to go to the local emergency room, to tell them she is Kathy’s doctor and she’ll be right over to take charge. What a fantastic thing to hear at this moment.

We finish our consultation with Dr. K and she gives us each a hug on the way out. Further proof that those working in the cancer field of medicine are of a different breed.


Thursday, December 14, 2017 – Some time in the wee-hours of the night I have a nightmare that wakes Kathy up. I vaguely hear her whispering my name, “Michael, Michael…” I wake up remembering the feelings of utter helplessness and fear created by the dream.

At 11:15 AM, we arrive at Memorial Sloan Kettering Cancer Center. Katie, Lou, and Danielle are there to meet us in the parking lot. Kathy has a fantastic support system of family and friends. It lifts her spirits to walk in to this first meeting with her private army beside her.

At 12:30, we are in an examination room when we meet two of Dr. McFarland’s nurses. Michelle, who will be leaving soon, does most of the talking as she trains Lauren, whom will be filling her position. This is when vitals are taken and health questions asked of Kathy.

Soon, Dr. McFarland arrives. He recommends a bone marrow biopsy of the spots seen on Kathy’s pelvic area. He wants to skip the bone scan recommended by Dr. K and go straight to finding out this mystery’s identity. We ask about biopsies being performed on the lymph nodes around the trachea. He tells us he wants to go straight to the area that is the greatest distance from what he believes to be the starting point of the cancer, in her lung. Apparently, the distance the cancer has spread from the initial starting point is used in determining what stage the cancer is in.

He wants to start the treatment off with chemotherapy, but not before he receives the results of the pelvic biopsy. If it is as he suspects, the same type of cancer that is in the lung, he will start the chemo with three drugs. Two chemical drugs that should stop the cancer cells from dividing. The other is a biologic, which  will stop the growth of veins to the cancer. I never knew cancer was connected by veins! I always assumed it was more like a cyst. Now I am starting to learn even more about the complexities involved in treating this thing.

He plans to give chemo sessions every three weeks. After two sessions he will have Kathy go through a CAT scan to make certain that it has stopped growing. Kathy’s progress will be measured by the CAT scans and how she is feeling. How she is feeling will include any symptoms that might start showing themselves from the cancer.

We need to especially watch for bleeding, chills/shivering, or a fever that reaches 100.4° F. If any of these occur we are to call Sloan immediately for further instructions.

Dr. McFarland does not have the MRI images of Kathy’s brain that were taken with and without contrast a month or so back. These were ordered up by her Ear, Nose, and Throat doctor who was trying to figure out why the left side of her face had suddenly gone numb. We hadn’t really thought on these much because the radiologist that wrote the report (which Dr. McFarland did have) interpreted nothing unusual on her brain. Still, Dr. McFarland wants to look at the images himself to make his own interpretation. I am ready to run back to Middletown to pick this CD up right then but the doctor assures me that it can wait until our next appointment at Sloan.

The doctor tells us he would like us back in two weeks, on December 28th. He still isn’t able to give us a date for the biopsy but assumed it would be done the following week, which would allow plenty of time for the biopsy results to be completed. If the results show cancer in the bone, as he suspects, then chemotherapy will start the same day we come to see him. Finally!!


Friday, December 15, 2017 – The first thing I do this morning is write up a Summary of our visit to Sloan the day before. We will have this faxed to Dr’s Fruchter and K before the end of the day.

After I arrive to work I start watching the clock to time my first break, once again, for when normal business hours start so I can begin making calls. First, I call the radiology department at ORMC to see about acquiring the CD images of Kathy’s brain MRI, Dr. McFarland requested. I get the same voice mail message I had the week before. Because this voice mail box didn’t return my call the last time I immediately call our secret weapon, Jill, at Dr. Fruchter’s office. I don’t know how she does it but when she calls the same number I did it goes right through and she gets the butts in gear over there in radiology. I love this woman’s status in the medical arena here! She has placed me on hold and comes back on in 45 seconds! “You can pick the CD up tomorrow after 8:00 AM.”

I go back to work but leave early, at 3:30. I don’t like working until my regular cut off time of 5:30 any longer. Both Kathy and I, need each others company more than ever. Besides, I still have a call to make and am pretty certain that it will take up more time than the last 15 minutes of break time I have remaining.

At 4:00 PM, I’m on the phone with Michael, at Memorial Sloan. We haven’t received a consultation and biopsy appointment yet. I ask that he check this out for me. I also request that the consultation and procedure be scheduled on back-to-back days because we live a good distance away. I explain that if he can do this then we can go to the consultation, stay at a near by hotel, and be right there for a short drive the next morning for the procedure.

The traffic is horrendous on the way to Sloan because it is so close to New York City. There are constant accidents which cause big delays for commuters. We can not be late for these appointments. Also, the drive causes Kathy to grab the “Crap Strap” numerous times, causing stress. A night in the hotel is just what Kathy needs to be completely stress free for the procedures she will be undergoing.

Michael says he will call me back after he sees what he can do. I go down stairs to explain the phone call to Kathy. Using her laptop we pull up Sloan’s Patient Portal and open Kathy’s account. We immediately see the fruits of Michael’s labor. He has a consult date already posted. The problem is, is that it’s for the day after we are suppose to see Dr. McFarland to begin chemo. That means the biopsy will be scheduled after the planned start of chemo and Dr. McFarland wasn’t going to begin chemo until “after” the biopsy results were in.

As we are discussing this the phone rings and it is Michael. I explain the dilemma to him and he understands right away. He informs me that this is the soonest we will be able to get back-to-back days for the two appointments. I tell him to scratch that alternative; just get us scheduled for next week and we will make the drive twice. Again, he tells me that he will get back to me after he sees what he can do. Noticing the time, 4:55 PM, I know it’ll be Monday before he gets back to me.

And it was…

OUR JOURNAL: Lessons, Love, & Fighting This Bastard Called Lung Cancer! Week 3-PET Scan (December 1-8)

GoFundMe

https://www.gofundme.com/teamfistbump

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).

Barner with Kathy and babies


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.

 

 

 

 

OUR JOURNAL: Lessons, Love, & Fighting This Bastard Called Lung Cancer! Week 2-Biopsy (November 24-December 1)

GoFundMe

https://www.gofundme.com/teamfistbump

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.Bear Creek WaterFall


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…”

adanocarcinoma_image

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…

OUR JOURNAL: Lessons, Love, & Fighting This Bastard Called Lung Cancer! Week 1-Diagnosis (November 17-24)

GoFundMe

https://www.gofundme.com/teamfistbump

This journal is meant to serve two purposes: First, and foremost, to help others that find themselves instantaneously thrown into a life or death fight against cancer. There’s no soft, cushy way to put it. It’s a fight from Day 1 and we want you to know, as other’s have shown us, that you are not alone: that the delays and set-backs are not yours alone to suffer. No one wants this and no one expects this, but it does happen. Kathy wants to help others come to terms with, and learn from everything we experience on this journey. The second purpose of this journal is so that friends and family can follow our progress, experiences, and whatever else crops up so your not left totally in the dark. We are fortunate to have every last one of you in our lives. This support system is a true blessing!

So, let us begin the journey…

Friday, November 17, 2017 – My wife and I have hiked numerous trails, in numerous states over the past 9 years of marriage. Today, at 3:45 PM, amidst confusion, fear, and countless questions, we tentatively set foot on this newest path – a path that will ultimately lead to outsmarting, outflanking, and destroying this bastard called Lung Cancer.

“Okay doctor, why did you call me in early for the CAT scan results?” My wife and I have been nervously awaiting this appointment – an appointment moved up two weeks at the request of her doctor. “Is it bad news?”

Dr. Alexander Fruchter, one of those rare doctors that has genuine concern for his patients on a basic, human level, responds, “I’m afraid it’s not good news.”

The words you hear about, but never in a million years think will be heard by your own ears. I slowly get up from my seat along the wall and sit behind my wife on the examination table.

“There’s a mass at the center of your right lung…,” I’m not certain of the exact words in the discussion that follow, but I am absolutely certain of one thing, the odds given that this mass is cancerous…a 999 chance out of 1,000.

And so, tentatively, we each place a foot on this path to recovery.


Monday, November 20th – The first weekday after learning of this cancer is a busy one. Like most of you out there Kathy and I must work full time. Both Kathy and I felt a tremendous amount of love that first day. We start the day off by telling our bosses. Both of us have a difficult time putting the facts into words because of these new, raw emotions that are still in the shock phase of understanding.

I will start with Kathy’s morning. She still isn’t ready to share this knowledge with the world (Hence this journal being released more than 4 weeks after learning of the lung cancer). She does share the news with a few special friends that need to know, not only for work purposes but because they hold a special place in my wife’s heart. The meetings are difficult, but I must point out several things that stand out to her. One being the amount of support by everyone with comments like, “Don’t you worry about work. We got your back!” Another note worthy topic comes as a joke. It was directed at a friend that likes to wear wigs. Kathy mentioned that she might need to borrow the red one from her friend’s collection. This humor broke the sadness and will be a very important part of Kathy’s recovery. That’s just the kind of girl Kathy is and I think it will help her by venting some of the fear, anxiety, and confusion from her mind.

All the offers of prayers and aide that came in numerous forms is very touching to Kathy’s soul…Thank you all very much!

My day started off similar. I tell my boss about the diagnoses and am told not to worry about my job. “I got your back”. Throughout the day people that are closest to me notice my disconnect from the world and ask if I am okay. I need to thank you all for your offers to help in any way you can. Where it be prayers, feeding pets, or just being there to talk to. Thank you all so very much.

On my first break I call Memorial Sloan Kettering Cancer Center, a facility recommended to us by Dr. Fruchter on the previous Friday. I am told that no appoint can be made until a biopsy is taken of the mass and a report made up. All I can do is give him Kathy’s insurance information and take a list of things he needs me to have faxed over to him to get the ball rolling ASAP.

I then call Dr. Fruchter’s office and speak to Jill, his nursing assistant. I tell her about Sloan’s request for the CAT scan report. She tells me not to worry, she will fax it right away. Jill is a true angel. Thank you for making things so easy for us!

Not wanting to have any unpleasant surprises down the road, and wanting to cover every base which is my responsibility in Kathy’s recovery, I call my bank to talk about a loan in case it should be needed. I meet my banker after work and am offered the perfect type of loan that gives me a line of credit and only charges me interest on what I need to take from it. This relieves a ton of worry for me and I think if you find yourself in this situation this should be one of the first things you do if you don’t have unlimited funds.


Tuesday, November 21st – Kathy is admitted into the cancer ward of Orange Regional Medical Center and a biopsy is scheduled for the morning of November 22nd.

That night, as I lie on my cot I start using an evil thing called google to play doctor and learn a little more about what we are up against. It takes exactly 3 minutes for me to turn as white as the sheet that covers me and feel a painful hollowness forming deep in my gut. My wife notices but I can’t tell her until I have discussed my findings with the nurse. A half hour later, after aging 10 years with this new knowledge that I have acquired from The University of Google, I finally step outside to seek out a nurse. There she is, in front of her mobile computer! I walk over to her and with a weak arm I lift my phone. A slow, hesitant finger points to the diagnosis my extensive investigation has unearthed. The nurse looks at me in shock, and smiles at the same time. “Don’t look up things like that! Look at her perfect blood work. It couldn’t be that.” The relief is instantaneous. I go back into the room, X out of that google page forever, and explain to Kathy the strange behavior that she has already sensed in me. Also, the nurse I had spoken to tells the nursing coordinator, who in turn tells the doctor, which leads to me being reamed out in a very polite way. Lesson learned…the hard way.

Sooo, NEVER, EVER, EVER use google to look up symptoms. I learned then that there are layers and layers and layers of factors that go into figuring out this complicated disease. It’s laughable when I think about it now but I will never forget the terror this venture caused me. Be patient and the correct information will come to you from those that spent many years studying it.


Wednesday, November 22nd – Biopsy day arrived with Katie, the youngest daughter, and her husband Lou knocking on the door. Our eldest daughter, Danielle, works in the medical field and is sick with worry from afar, unable to escape work to be with us. Text messages from her are blowing up my wife’s phone with love and encouraging messages. Katie has climbed onto her mom’s bed and placed her head on Mamma’s lap. I think to myself, how can this be?

As noon approaches, and the morning slowly slips away we begin getting testy with the nurses. Nurses, by the way, that are angels sent from heaven in my opinion. Finally, we are told there is someone on the table and once their procedure is complete Kathy will be next. We wait…and wait…and wait. Finally, we are informed that the procedure has been cancelled, Kathy will be discharged, and we will have to return in 7 days, on November 29th for the biopsy to be done through out-patient. WHAT!!

Understandably, the valve on the pressure cooker fails. Things are said without thinking them through. Angels are made to feel shame by me as I go into the hallway for a private session away from my wife. All for nothing. These ladies can do nothing, only pass on the message. “I want to speak to Dr. Fruchter immediately!” I say as I head back into my wife’s room.

I mention all of this because I acted on impulse, and in error. I learned of my error as soon as I reentered my wife’s room and sat down beside her. Can you believe that my wife, this beautiful person that has just begun a fight for her life, is the one to make me see things differently? With tears in her eyes she says, “Who am I to take that spot on the surgery table if an emergency came up and someone needed to get help right away? If that’s me one day I hope they will do the same for me.”

My anger, fear, and confusion seem to melt away, followed immediately by a wave of quilt as I think of how I had behaved. Within minutes I receive the call from the doctor that I had requested in anger out in the hall.

“Michael, I don’t know what happened.” I actually hear his voice crackle with emotion as he goes on, “I came as close as I ever have to quitting medicine when I heard about this.” Of course I tried to take the blame from him but I was still frazzled with emotional drain and I couldn’t get the point across as clearly as I wished too.

Before we leave, I go over to the nurse’s station and apologize for my anger. I tell them all that I love them and mention that they are angels sent from heaven to comfort my wife.  My wife does the same and is in tears as she gives them a hug. The first thing I do when we get home is call Dr. Fruchter’s office. I am able to, with a much clearer head explain to him how thankful Kathy and I are for him finding this cancer so early. I don’t think many doctors would have ordered the chest scan with the symptoms she was showing. I explain that with this early detection, and not knowing how long this mass had been in her lung, another week to wait is nothing. The relief I hear in his voice proves to me that I have done the right thing.

I want you all to remember that if you find yourselves in the same boat as Kathy and me then you will be meeting the kindest, gentlest, most caring people in the world. Please think things through before you hurt them, okay.


Thursday, November 23, 2017, Thanksgiving Day – The next morning, Kathy and I wake up in our own bed. While lying there we discuss this blog idea – wanting to help others destined to follow us on this path to recovery. Already, we have both learned that mistakes, misunderstandings, high expectations, and let downs are going to form countless bumps and barriers along this journey. No one should feel that they are alone when these bumps and barriers present themselves, and everyone should be prepared for it when they do.

Our first mistake is to expect speed – to assume that we will go straight to laying a plan out with our chosen oncologist to fight this thing. It’s like a pressure cooker in your core, ready to explode because of the steps you must to go through in order to get started healing! Confusion, fear, anger, and uncertainty only add to the build-up of pressure.

The importance of a support system is just now becoming apparent to me. We definitely have that in our loving family and numerous friends who have offered prayers, either from them alone or in prayer groups at church or through starting prayer chains. Kathy and I are firm believers in the Power of Prayer and these offers are more important to us than you can ever imagine! Thank you!!

Also, the true meaning of love becomes crystal clear in this time of fear and confusion. You want to protect, you want to take the place of, you want to take away the fear, you want to comfort, you want to…you want to…you want to. Your helpless, afraid, confused, and hurting inside. You walk around all day, lost in thoughts of the sounds of laughter  or the special light that shines in the eyes that are directed at you because you said something corny that caused laughter from someone who truly loves you. Memories of good times permeate your thoughts throughout the day, causing you to drift off into another time, a happy place, an unforgettable moment.

You must get that fire burning bright and hot in your belly to fight this bastard!

Update: Book For A Smile Exchange

When I started this project back in early October, I had no idea the impact it would have on me. The joy I feel in knowing that I have actually brightened a kid’s day in a small way is not something small to me. It’s a big deal.

My original plan was to get rid of the left over 1st editions of The Adventures of Nick and Billy I had stored in boxes under my writing table (click here to see the first post I published announcing Book For A Smile Exchange). I think this project has the potential to be a big thing and I plan to see it through; to continue it for as long as I am able.

Hopefully, a child somewhere, whether it be the hospital in Montana, the detention center in Florida, the school in Connecticut, the makeshift tent-city in the Keys, or several other place that recently received my book, a kid has a grin on his/her face as they read about the two boys preparing their camp in the swamp for an upcoming camp out.

Today I had the honor of meeting two women whose lives are dedicated to helping children. They were kind enough to accept a donation from A Book For A Smile Exchange for the children that pass through their facility daily. Meeting these ladies only strengthened my resolve to bring a smile to children through this project.

Orange Regionl CenterMichelle Rogers, Pediatric Nursing Director (Left), Myself (Center), & Michelle Ferguson, Child Life Program Coordinator (Right), at Orange Regional Medical Center, Middletown, NY.

I ask, that if any of you know of a place similar to what I’ve listed above that can use good wholesome reads for teens and young adults to please respond by listing the facilities name and contact information, Thank you!

FYI: The book these kids will be receiving is an award winning book. As one reviewer put it, “ …is a real page-turner with one dire event building on the next, making it exceedingly difficult to not consume this tale all in one sitting. Charming, funny, rugged, and terrifying—“The Adventures of Nick and Billy” is certainly one coming-of-age novel I highly recommend for young (over 12) and old alike!”.

young adult first

Lonely child photo credit to:    Jesús Rodríguez

LAST DAY to register for the Author/Blogger Halloween Hop!

Nesie's Place


Halloween Hop Banner

Want to increase followers/traffic on your Facebook page?

Authors and bloggers are bringing a spooky good time to Facebook for Halloween! JOIN US!

The Facebook Halloween Hopfest runs from Friday, October 27, 2017 through Tuesday, October 31, 2017.

Register today by:

– Adding the direct link to your Facebook AUTHOR page (NO groups, please!)

– Adding the type of giveaway you’re sponsoring.

– Adding the type of prizes in your giveaway.

REGISTRATION CLOSES FRIDAY, OCTOBER 20, 2017!

On Monday, October 23rd (or sooner) you will be sent the complete list of participating authors/bloggers. When you create your Facebook post, YOU MUST INCLUDE THE NAME AND PAGE URL OF THE NEXT PERSON ON THE LIST (after you) for this to work. If the hop is broken and readers cannot advance to the next page, they will give up. Take advantage of Facebook’s option to pre-schedule your post. With respect to time…

View original post 82 more words

Sharing Memorable Moments From My Past

When I started writing this post I had a thought, Why not change things up with a Video Blog showing people the memorable moments you happen to have caught on tape! So I went through my files and found a few that I think you might enjoy. The moments you will see are glimpses into my past when I was at the most peace with myself and the world we share. Of course, there are so many more events that I truly want to share but can’t because I had no Go Pro on my head:) Hope you enjoy these!

PLEASE CHILL PEOPLE! – America’s Future is in Good Hands.

“The kids today have no…,” has been the first words in various sentences far too often in my lifetime. I, too, am guilty of this…

But never again will I say this…I had an eye-opening experience this weekend, thanks to a couple of Scouts and their fathers that I met outside Lowes in Wilkes-Barre, PA.

Boy Scouts 1Meet Logan (to my right) and Jack (to my left). Hope you boys learn a little something from Nick & Billy! May your lives always be full of adventure!

MY OBSERVATIONS

The first observations I want to make are directed to the fathers, who were out there helping their sons earn money for this great organization. I didn’t say this, perhaps I should have, but you two deserve a big congrats for standing beside your boys and teaching them how to become great men! It’s not easy in this day and age but you are proof that it can be done. You were an inspiration to me and hopefully to everyone else that had the pleasure of meeting you guys this day!

Now, on to the future of this great nation: Logan was very proud to share with me that he will be an official Boy Scout next month. My impression of him is that he will be a leader. He had no problem voicing his thoughts and intentions to me. I believe that as Logan grows older and adds experience to his life he will use this knowledge to help others and be very effective at it. He is friendly, very sociable, and carries an aura about him that thirsts for adventure.

Jack, on the other hand, seems to be a person of few words. He is a Webelos (I sincerely hope I am getting this rank correct guys!) Scout. He might be shy, as I was at his age, but make no mistake! Those eyes are very observant and taking in everything. He seems to be an observer, perhaps a scholar. There is a bright mind in his little noggin that is taking in all that his eyes show him. I couldn’t help but get the impression that one day he will become a problem solver in whatever field or path he decides to take. And of course, because he is a scout in reality and heart, he too, thirst for adventure!

As I was driving away from Lowes that morning I couldn’t help but recall the days of my youth when I would over hear old timers making comments that started with, “The Kids today have no….” These boys helped me to remember that this hurtful line is not new, but has probably been repeated for centuries. With guidance, children become great adults. It’s as simple as that.

As I write this post I am chewing on some caramel popcorn that I bought from them. No surprise…it’s the best dad-gum caramel popcorn that I’ve ever eaten! Geez, why cant Orville Redenbacher make it taste this good! Okay, I’m getting side-tracked – food always does that to me! As a former scout, I remember the challenges these boys are given. It’s not all fun and games. It’s about learning skills and becoming a better person. It makes a youngster WANT to become a better person. The Boy Scouts of America would not exist if it weren’t for people like these fathers I met and donations. I would like to ask that you make a $5 donation to this fantastic organization by simply clicking here.

And I would like to also ask that when you see these youngsters standing outside a store trying to raise money help them out. These are good kids that are trying to make this world a better place. Please show them how much they, and their beliefs, are appreciated!

THANK YOU LOGAN AND JACK!!

 

 

 

Book For A Smile Exchange!

Anyone Know any Administrators at Children Hospitals or Children Homes for Abused Kids?

Okay, here’s the deal…at one time I thought I could design my book covers as well as any person that does it for a living. I learned that this is not so. It’s blurry and, most importantly, not something the distributors want to list on their book fairs….

Final Cover Rougarou

However, the story remains the same and I know for a fact that it can bring a smile to a child’s face and, occasionally, a jaw dropped to their chest in amazement or fear for our young heroes of the story!

As I write this post, three boxes of this first edition constantly aggravate me because they are stacked under my writing table, perfectly poised to block any attempt I might make at stretching my legs! You see…my books have life, and they do not like being locked away in these Amazon boxes, unable to spread joy to individuals as they were created to do. WHAT HAVE I CREATED!!! Please help me by re-blogging and/or contacting me with the name of a facility, phone number, and contact person.

Let’s do our part in helping a sad child smile a bit during an otherwise crummy day, okay?

 

Lonely child photo credit to:    Jesús Rodríguez

 

The Mystery of the Rougarou

Here is a blog from someone working on his first novel to publish (I can’t wait to read it!), thank you for the awesome review Jim G. Black!

brokenanvil29325

IMG_0522

When I was a kid I played outside most days. Home video game consoles were either not on the market, or were a new concept (did anyone else have Pong?). I remember playing hide and seek, kick the can, touch football and other games, when I wasn’t jumping my bicycle over earth ramps and riding through the woods. This was also before mountain biking became popular. Well, I recently read a great young adventure book, The Adventures of Nick and Billy: The Mystery of the Rougarou, written by another man whom I have had the pleasure of meeting, Michael Hoard. Curious to know what a Rougarou was I Googled it. It is a beastie, well known of in Louisiana folklore, with the head of a wolf and the body of a man. Being a lifelong wolf man fan, and occasionally looking like one myself, when I get a little lax…

View original post 273 more words