Note: All underlined words are links to the sites I am currently discussing.
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), Week 4 (The Oncologist) , Week 5 (Bone Biopsy), Week 6 (Acceptance of Learning The Stage), Week 7 (Immunotherapy), Week 8 (Team Fist Bump is Intensifying), Week 9 (The New Norm)
Tuesday, January 23, 2018 – Session 2 of Immunotherapy.
We wake up in our room at Extended Stay America – a room found for us, and discounted, by The American Cancer Society. It’ll be our last stay here. We are both already stressed, but when you add the crummy service and rainy, humid weather that has found a way to creep into our room, neither of us ever want to step foot inside this place again. Kathy agrees with my statement that the Hyatt House will be the ONLY place we stay at for future trips to Memorial Sloan.
We are joking around as we walk through the doors of Memorial Sloan Kettering Center at 11:30 AM. After we check-in we grab a seat in the waiting area for her first appointment – Lab. It isn’t long before they call Kathy in. Once again she must use breathing exercises to get her heart rate down before they release her. After several minutes it returns to normal and she is sent out to rejoin me in the waiting room.
At 1:48 PM we are led to the examination room were we will meet Dr. McFarland. Always, at the back of your mind, there is the fear the doctor has seen something else to be concerned about, but the numbing fear of walking into this place is starting to fade.
The first thing Kathy brings to the doctor’s attention is the persistent cough that she has had for several weeks now.
He listens to her breathing and tells us that he thinks Kathy might have a small respiratory infection. “Nothing to worry about. Take Mucinex for a week and the cough should be taken care of.”
He also shares with us that the molecular testing that was done on the biopsy from her lung shows that the cancer is of the KRAS mutation. “Studies show that this particular mutation seems to respond well to Immunotherapy.” I was unable to find any studies online to link this mutation to Immunotheapy so I apologize for the scientific description I had to link above for you to view.
We are both happy to hear this. Any good news we receive behind these doors is taken with immense relief by us both.
Kathy then ask the question, “Do you have a back up plan if Immunotherapy does not work?”
Dr. McFarland tells us that if this treatment doesn’t seem to be working he will start adding Chemo to Kathy’s Immunotherapy. All we can do now is hope for positive results from what she is currently undergoing. He goes on to remind us that everything seems to be going well and the minimum side effects is definitely a good thing.
Another good thing to hear!
As we leave, we ask the doctor what size shirt he wears so we can bring him an Official Team Fist Bump t-shirt on our next visit.
We head straight to the waiting room in the treatment suite area of the center. Soon after Kathy’s name is called and we enter room 19.
She reverently places War Bear and the Love Pillow on her lap as the nurses prep her for Session 2 of Immunotherapy with Pembrolizumab. As the 200mg, $17,000 bag of fluid drips into her vein, she works at getting Pandora to come up on the entertainment center provided for the patient. Once country music starts playing she sits back and gets quiet. Such a beautiful and strong person. Why?
After 30 minutes a chime goes off signalling the bag is almost empty. The nurse comes in to adjust the bag so the last drops empty. After this the Zometa drip is started. Because of Kathy’s osteoporosis this drug will be added to Kathy’s treatment every 3 sessions. This drug’s purpose is to strengthen Kathy’s bone and keep the cancer from spreading further in her pelvis.
Fifteen minutes later the chime sounds and she is unhooked. It’s been a long day.
We walk out to our truck and start the journey home. But not before stopping at the halfway point to grab a sandwich from Starbucks…this is becoming our ritual.
Wednesday, January 24, 2018 – Kathy goes to work at 7:00 AM, but returns home at noon feeling fatigued from the treatment the day before. This seems to be the pattern. She rest on the love seat and we watch TV.
Thursday, January 25, 2018 – Kathy goes to work and is able to work all day.
One thing we have learned slowly over the past 2 months is that stresses have started building in us. Difficult topics have been all but impossible to discuss…for me anyhow. Kathy attempted to talk to me about the future a while back but I can’t find myself able to think like that. We have decided to attend a cancer group meeting hosted by our local hospital, Orange Regional Medical Center.
That evening, as we sit in the conference room where two other couples have seated themselves, one guy ask the moderator as she walks in, “Where’s (a lady’s name)“.
The moderator looked down for a moment before sharing that the lady had passed away.
Me and Kathy look at each other. This is precisely the reason we are hesitant to attend these meetings!
However, as the meeting progresses and we start feeling more comfortable with these kind, yet scared people, we do feel some sort of relief begin to form in us. We aren’t able to talk about the difficult issues but we do get something out of it. I can’t exactly find a specific word for it but I can tell you it’s in the category of comfort.
As we are leaving the moderator mentions a fundraiser that will be taking place to raise money for the Oncology Nurses Association of Orange and Sullivan Counties. After mentioning that I might be able to help them by setting a booth up to sell books at the dinner event, she ask that I stop by the next day to discuss it further. She likes the idea.
Back home we both begin to get excited by the idea of helping out an organization that has offered to help us with a gas card to pay for trips to treatment. We can’t wait to learn what the meeting will produce!
Friday, January 26, 2018 – Kathy goes to work at her usual time. She is feeling good.
At 10:00 AM I walk into the cancer center at ORMC for my meeting. I have brought an autographed copy of The Adventures of Nick and Billy for the lady I will be meeting with. I learn that she is addicted to reading and can’t wait to read it. The meeting is definitely starting well!
And it continues going well! I share with her that just a couple of weeks before Kathy was diagnosed with cancer I had hand delivered a dozen autographed copies of this book to the pediatrics ward of this same hospital as part of my Book For a Smile Exchange program.
She is excited to have me take part in their annual fund raiser which will take place in April. She just needs to notify the rest of this organization’s committee for approval, but doesn’t see a problem.
We discuss a few details and shake hands as I leave. We are both excited…and after I call Kathy at work to tell her about the meeting all three of us are excited!
Saturday/Sunday, January 27/28, 2018 – We both stay home and enjoy each others company for the weekend.
At one point I ask Kathy if her cough seems to be getting better. She tells me that the cough still bothers her and the Mucinex still hasn’t caused her to cough up anything.
Monday, January 29, 2018 – Kathy goes to work at her normal time. During the day there is a fire drill and as they gather at the muster area a lady lights a cigarette. Kathy smells the smoke and even though it doesn’t affect her breathing in a painful way the fear causes her to break down.
Once back inside she visits her friend/boss and has an emotional big break down in the office. The stresses are beginning to break down the brave front she has been putting on. Her friend tells her to take a long weekend starting Wednesday. Such a big, heartfelt gesture!
Kathy returns to her office and begins getting things in order for her long weekend.
That night we discuss this and decide to take a trip to Connecticut for a couple of nights. Getting off from work will be no problem for me since my broken foot will keep me out of work until late March. The trip will be good. It’ll be nice to hit the interstate and pass the exit to Memorial Sloan Kettering Cancer Center for a change!
Wednesday-Saturday, January 31-February 3, 2018 – We hit the road for Mystic, Connecticut! Several days earlier I was able to get us a free room at a hotel affiliated with a local casino that we had visited three years ago while on vacation in Mystic. Perfect!
We visited our favorite restaurant in Mystic for some genuine lobster bisque, strolled the store fronts and visited Kathy’s favorite Irish store, Irish Eyes, visited a Rhode Island beach to listen to the soothing sounds of waves crashing on the shore, and played some slots. It was a fantastic and relaxing few days that was much needed by us both.
Perhaps the best thing to happen on this trip was Kathy’s coughing becomes less and less prevalent, and by the time we return home on Saturday evening the cough is all but gone!
Sunday-Saturday, February 4-10, 2018 – Throughout the week Kathy is able to work and the cough disappears!
Sunday, February 11, 2018 – Our good friends Bill and Nancy will be stopping by for a visit this afternoon. Kathy has not seen them since before she was diagnosed due to one or the other of them being sick. Concerns of spreading anything to Kathy has kept them both away.
As I get some work done on my computer and Kathy works at cleaning house I can sense a change in her. My plan is to go to the store once I am done with the computer work, and start on the vacuuming once I get back. Unfortunately, I do not share my plan of helping her clean house. While she’s cleaning the bathroom the slow boil of emotions within her reach the boiling point and she lets me have it good!
After a very tardy sharing of my plan, her anger transforms into sobs as the true cause of this outburst presents itself – She’s as scared as a five-year-old lost in a department store full of real life demons. We tightly embrace for a long moment as she sobs against my chest, trying her best to explain just how scared she really is. Finally, I hear her take a few very deep breaths and release them slowly. A sign to me that the pressure, once again, is nearly gone. She pulls her head away and feels terrible because she has made a big wet spot on my shirt. We can’t help but laugh now.
I know it will build again and need venting within the next week or so, but at least she feels better for the moment. We decide to talk to the moderator at our next group meeting to see if we can get into some one-on-one counseling in the near future. We see now that there are issues needing to be brought out with the help of a professional.
Later that afternoon Bill and Nancy come by. The visit is good for us all. They are actually the same people that handed War Bear over to Kathy. Good friends are needed…especially on this day. Thank you Bill and Nancy!
Monday, February 12, 2018 – Kathy goes to work at her usual time. She will get off at noon so we can prepare for our trip to stay the night at the Hyatt House. Her 3rd session of Immunotherapy will take place tomorrow.
I head over to the mall. Her Pandora bracelet doesn’t have one charm on it from me so I decide to change that this Valentines Day. I pick out one that looks pretty to my untrained eye. I then stop at another store and get her some chocolate covered strawberries.
Kathy is already at home when I get back. I decide to leave the charm and a card in the glove box so she can find it once we get on the road to Memorial Sloan. This girl deserves her gift early!
I sneak the strawberries in so she can have a little something on the actual Valentines Day and we get packed. Once we get back to the truck I give her the charm and card. She is definitely cheered up!
We arrive to the Hyatt House at 3:30 PM. At 4:00 PM our room phone rings. It’s the manager telling me that their computer had a glitch in it and my credit card was denied. He tells me it wasn’t my card, but the system. I can come down to the lobby to give him the credit card info or do it over the phone.
Because we are so far from the front desk and I’m still using a crutch I decide to do it on the phone. I’m such an idiot!
That night after dinner I stop at the desk to ask if the problem was straightened out. “What problem,” was the response.
Long story short, I was scammed out of nearly $300 by the time I cancelled my card. Lesson here: Always go to the front desk!”
We enjoy a few hours of watching the Olympics then decide to turn-in for the night. Tomorrow will be Session 3 of Immunotherapy for Kathy.
Three weeks from now we will learn if this treatment is working to hold the cancer at bay. We are, and by we, I mean all of Team Fist Bump, are praying this is so. We love you all!