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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…