OUR JOURNAL: Lessons, Love, & Fighting This Bastard Called Lung Cancer! Session 5-Immuno/Road Trip (March 7-March27)

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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)Session 2 (Immunotherapy), Session 3 & 4 (Immuno/CT Comparison)

Wednesday – Friday / March 7 – 9

Kathy comes home from work early on Wednesday, feeling fatigued from treatment the day before. However, we are in high spirits after learning Tuesday that the treatment seems to be working and all tumors are shrinking.


I am sorry to say that our excitement on visiting everyone caused us to forget to take pictures of many family members. Of course we realized this later. I’ll try to show the family by finding pictures taken at other times.

Kathy and I set off on a trip that will take us through 10 states in 2 weeks. Our goal: To meet as many family members as possible. We have been talking about a trip like this for years and now, because certain priorities in life have suddenly changed, we hop on a plane to take us to the starting point of a nearly 3,000 mile road trip!

DAYTONA BEACH, FL

Saturday, March 10

Can you imagine two big NASCAR fans landing at the airport in the same city as the most famous super speedway in the world? As the airplane touches down, Kathy and I briefly discuss speeding off in our rental car to find, and catch a glimpse of this famous track. This track has special meaning to us. Not only is this the race we look forward too all winter long because it’s where the NASCAR racing season kicks off, but it’s the track a driver we both idolized passed away.

On the final lap of the 2001 Daytona 500, Dale Earnhardt was killed in turn 4 as he helped his son, Dale Jr. win the race by blocking another driver from gaining ground on the final turn of this race.

As our plane taxis to the gate we will disembark the plane from I glance out of the window and spot the track right next to the airport. My jaw drops as I find myself alongside the straightaway between turns 2 and 3! All I can say is, “Wow”!

We rent a car a learn quickly that we have arrived in time for the beginning of the famous Daytona Bike Week! Five minutes into our 2 week road trip I find myself laughing so hard I nearly peed my britches!

We stop at the gas station you see above. I cautiously enter the parking lot – there are motorcycles everywhere. I park and stare in wonder at the track across the street as Kathy goes inside to get us some waters. A couple minutes later Kathy opens the door and quickly hops into her seat. She looks at me laughing and says, “I thought that car,” pointing at the car to our right, “was the rental! I got in it and noticed a pack of Marlboro’s on the dash and jumped out real fast. The lady on the Harley in the next parking spot saw me and started laughing when I told her what I had done.”

I about died laughing. We definitely started the trip off by making good memories!


PALM COAST, FL

Saturday, March 10

FL_PalmCoastSign

We depart Daytona and start on the short 25 minute drive to Palm Coast, FL, where we will start our trip off by visiting my dad, Mark, and step mother, Barbara. It’s been years since I have seen them and Kathy has never met them.

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My dad in red shirt holding Barbara’s arm in picture taken during a previous visit by my sister.

All I can say is that this visit is an inspiration of strength, courage, and devotion. Barbara has a rare disease that affects her nervous system, and my father devotes every minute of every day to bringing her comfort and quality of life. Barbara is an inspiration in every word and action she does. She always wears a smile and her words convey love and peace in every subject. Instantly, Kathy and I see the immense love that exist within the walls of this home.

Early Sunday morning, just as the sun begins peaking over the horizon, promising a glorious sunrise, my dad and I hop into my rental and head off for a local convenience store to buy some frozen shrimp to use as fish bait. Not only has my dad spotted manatee swimming in the small canal behind his house but he’s seen some pretty big fish as well. One thing about these small saltwater canals is that you never know what you might catch. We are hoping to hook a few lunkers!

No such luck though. It could be just the time of year. I do miss one nice fish due to a malfunction in my tackle and we see something large surface right between our bobbers, but are unable to land anything. The relaxation, wearing shorts, and no place to go made the day valuable enough though.

The highlight of this trip was bonding with my father. He spends hours discussing his daily routines. Intentionally, or unintentionally, teaching me what it takes to be a good caregiver. He shows me exercises that he does daily to keep himself in good physical condition. I’m not afraid to admit that I didn’t repeat these exercises on the spot because I would have struggled to make them look so easy:) This guy is a beast!

Kathy falls in love with both of them. My dad’s devotion to Barbara touches her, and Barbara’s outlook on life inspires her. As we drive away we are in awe of how much this visit has done for us. Thank you dad and Barbara. We can’t wait to visit again!


PANAMA CITY, FL

Monday, March 12

FL_PCBWaterTower

It wouldn’t be right if we didn’t start the Panama City segment of our journey off by giving thanks to Rhonda D., of Dothan, AL. You might remember her as the winner of the Team Fist Bump Appreciation gift (Amazon Echo & T-shirt). We have never met her in person and she is willing to meet us at a location on the way to Panama City. Unfortunately, as we are making our way to the point of the meeting she informs us that she is suffering from a stomach bug and didn’t want to chance Kathy catching it. We will catch you next go around Rhonda!

So, we continue on toward Panama City. This is more of a drive-through than visit. You see, Panama City is the town I lived in as a child and there are a couple of stops I must make. Here is the list:

  • We visit my cousin Missy. It’s always great to see my cousin!
  • We plan to go by my Aunt Jo’s but she has a cold and we can’t chance it spreading to Kathy. We will see her another day!
  • We visit the grave site of my grandfather (Bubs), grandmother (Cassie), and baby brother (He died soon after birth). Love and miss you!
  • We visit another cemetery to visit my grandfather (Tom), grandmother (Dickie), and uncle (Harry). Love and miss you!
  • We drive by Bub’s and Cassie’s house where I remember climbing the plum and pecan trees as a boy.
FL_GrandmasHouse
Bub’s and Cassie’s House today. No flowers, no plum tree, and one dead pecan tree in the back yard.
  • We drive by my childhood home and still see the fireman’s sticker I received in kindergarten to place on my bedroom window.
  • We drive 2 doors down to see the faint white circle of paint me, my brother, and neighborhood friend placed there 43 years ago. Boy did we get whooped good for that little fiasco! Kathy got a kick out of this, lol.
  • We drive by Tom and Dickie’s house along Pretty Bayou.

Leaving town, I wonder if I’ll ever see it again.


PENSACOLA BEACH, FL

Monday, March 12

FL_PennsacolaWT
Pensacola Beach Water Tower

As we arrive in Gulf Breeze (Located on the outskirts of Pensacola), weary from our first leg of the journey, we check into our hotel and decide to hold off on further exploring until the next day. We need a good nights rest.

Tuesday morning we wake up ready to roll! We pack and load the rental then cross the bridge onto Pensacola Beach. This beach is located on a long peninsula and our ultimate destination on this beach is Ft. Pickens, located on the very tip. Of course, along the way we stop so Kathy can walk on the beach (My crutches don’t do so well in the sand) and we can snap a few pictures:

After a slow, 20 mph drive along the peninsula’s length, we arrive at Ft. Pickens. This fort is amazing and holds a lot of history, some of which I will list below the pictures.

  • Ft. Pickens was built by the United States and construction lasted from 1829 to 1834, with 21.5 million bricks being used to build it. Much of the construction was done by slaves.
  • By the time of the American Civil War, Fort Pickens had not been occupied since shortly after the Mexican-American War. Despite its dilapidated condition, Lieutenant Adam Slemmer, in charge of United States forces at Fort Barrancus, decided Fort Pickens was the most defensible post in the area. He decided to abandon Fort Barrancas when, around midnight of January 8, 1861, his guards repelled a group of local civilians who intended to occupy the fort. Some historians claim that these were the first shots fired in the Civil War. Despite repeated Confederate threats, Fort Pickens was one of only three Southern forts to remain in Union hands throughout the war.
  • Captives from Indian Wars in the West were transported to the East Coast to be held as prisoners. From October 1886 to May 1887, Geronimo, a noted Apache war chief, was imprisoned in Fort Pickens, along with several of his warriors.

MOBILE, AL

Tuesday, March 13

Several years ago, while on a work trip to replace some malfunctioning survey equipment on board a vessel my company was working on I stopped at an oyster bar in Mobile. While eating I texted Kathy to tell her how good the food was. She was jealous and I promised to take her there one day. Now, on our way to visit my family in Louisiana, I can make good that promise!

Wintzell’s Oyster House is a must see! It offers numerous oyster dishes that are out of this world. As you can see above, Kathy and I get a sampler dish where we polish off everything but the shell…I even found a pearl in one of mine!

After this fantastic lunch (It was actually an early dinner due to being delayed 3 hours on I-10 due to an accident) we decide to further explore the area. Kathy mentions to me that she was touched by beach fever and wanted to see another one. I happen to know that the last of the white, sandy beaches are located just to the south of us, on Dauphin Island. Any further west and the white sands disappear, replaced with mud and mud colored sand.


DAUPHIN ISLAND, AL

Tuesday, March 13

After crossing the bridge onto the island and asking for directions to beach access points where I don’t have to huff it a quarter mile on crutches to reach sand we find this wonderfully quiet spot. Besides a couple of boys playing along the shore we had the place to ourselves.

We enjoyed watching the birds diving to find dinner and just made small talk. It was a special time. We left here and found another spot along the beach to park, just in time to witness the crew change taking place on a platform not too far offshore. The two crew boats you see in the picture above came right along the shore. I pointed out to Kathy that the men we saw on the boat’s deck where happy, just like I use to be when it was almost time to hop in my truck and head home. That was pretty cool.

We sit for a while just watching everything going on around us then start the car to head for Louisiana.

I-10 wesrbound through Mississippi!


LAFAYETTE, LA

Tuesday, March 13

LA_sign

We arrive late, mom is in bed. Wes, my step father is up. It’s good to see him. He’s a tough old oil-field man that never makes a big show of emotions. People often confuse this with him not liking them but that’s far from the truth. His love is shown through actions more than words. This is typical of any man that has spent his entire life working in the oil-field, where words don’t make the man, actions do. He and Kathy have a special bond I think. He calls her, “That damn Yankee,” but to the trained ear you can tell it’s all in love. Personally, I think her tough New Yorker attitude gives her an advantage when dealing with Wes. He’s a good guy and I think the world of him, and truly appreciate how he treats my mom.

Within ten minutes of us arriving the car is unloaded and we are all in bed. Been a long day.

LA_MKMW

The next morning mom is up when we make our way into the living room. My mom and Kathy really have a tight bond. They hug and cry while me and Wes kid them a bit. They missed each other and it warms my heart to see the two of them get along so well. Mom cooks breakfast and we devour it. They plan on hosting a Bar-B-Que later in the afternoon. Kathy and I  decide to take a trip to a nearby lake to see if we can spot some alligators warming themselves in the sun. We tell mom we’ll be back in time for the Bar-B-Que that evening and head off for a bit of exploring.

We spend a few hours by the lake looking for gators and sitting out in the sun. We Spot a few but no big ones. We think if I was able to do some hiking we might find some in the more  remote locations along the lake shore, but we’ll never know. It’s a good few hours spent talking and enjoying each other’s companionship.

After several hours we start thinking of the steaks that will be cooked soon. We don’t want to be late so we head off.

We get back to the house and sit on the back porch while mom and Wes prepare the pit. My sister, Sandy comes by with Ethan. Also showing up are my niece Kayla with her daughter Capri. And later, Daniel, Capri’s father. We enjoy a great evening of sitting around and hanging out.

The pics below show Capri explaing to me how things will be while I’m staying at grandma’s house, Capri showing me how to properly operate my boot, Kayla & Capri, Nephew Ethan, and Sis, Sandy and Ethan with a big red fish (Had to use old pic of sis).

The next afternoon, Thursday, me, Kathy, and my mom are invited to my nephew’s school to eat lunch outside in celebration of Book Week. I decide to bring a copy of my book,  The Adventures of Nick and Billy, so I can donate it to his school’s library.

I wasn’t expecting the surprise request by his teacher to talk to his class about the book and being an author in general.

I must admit I was scared to death when the request was made but decided I must take this giant step since it’s something I really want to do some day. I’m glad I accepted the invitation! These kids are great. I was thrilled when they all held up their hands wanting one of the three book markers I had on me. Of course the kids were worried that I was cutting into their recess time so when I mentioned this they all said they wanted to go and play:) It was a great experience for me, as well as a challenge I now know I can handle!

On Friday, the last full day of our visit, me and Kathy take a trip with mom to the casino. My sister Sandy even came out to meet us after work. For any of you that have ever visited a casino have you ever hit the “Max Bet” button by mistake? Well, Kathy did, lol, and the Max Bet was $5. She won $1,400! Of course after she split it with me and we continued playing the winning number didn’t look nearly as impressive by the time we left.

LA_Crawfishing

On our way to the casino you can see modern day crawfish/rice farming operations

We leave there early because Kathy and I will be driving to Tennessee tomorrow for the next leg of our journey. We go to bed early, wake up early, and say our good-byes. Mom and Kathy are crying good even though mom and Wes will be driving their camper to NY for a visit in April or May.

Eventually, we haul ourselves into the car and hit the road, pilot and co-pilot, starting our northern turn.


MURFREESBORO, TN

Saturday, March 17

TN_Sign

Early Saturday evening we pull into my brother, Paul’s, and Sister-in-Law, Julie’s, drive way. We are greeted by their 6 month old, 80 LB, Bull Mastiff/ Rottweiler mix puppy. Paul and Julie come outside to control the situation as this baby beast’s excitement threatens to cause excess slobber on our faces and bruises on our butts. Cooper, the old and mellow(er), Silky Terrier, is yapping away but no threat to grossly coating us in slime or knocking us to our derrieres.

Once all luggage is brought inside we relax on a comfy sofa (Sorry I stole your spot for a few days bro) and catch up on old times. Paul is careful to stay in Kathy’s good graces. Paul jokes how Kathy didn’t always love him like she does now. Certain childhood pranks that carried into adulthood weren’t accepted too well by my wife, lol. Now, after getting to know each other better they have formed a close bond. Julie and Kathy are like sisters, which indeed they are. I love to hear them carry on.

We will only be here for one full day. Paul and Julie talk about an interesting park and museum near-by that we can visit tomorrow. Sounds like a plan!

On Sunday we load into a car and head off for the museum. We won’t make this an all day affair because Paul has planned for us a Bar-B-Que of his world famous, cajun season injected pork loin! Kathy and I are game for that!

One of the bloodiest Civil War Battles took place at Stones River. As I walked through this beautiful museum my heart broke for the young men, and boys (Union & Confederate), on those cold, violent days of December 31, 1862 – January 2, 1863. Pictured above is me and Kathy (Left) & Paul and Julie (right)

When we get back to the house Paul begins building a fire in his back yard where we can gather while the meat is cooking. Joining us will be my nephew Ben, nephew Gavin, niece Taylor, Mr. Bud (Julie’s father), and Mrs. Claudine (Julie’s Step-mother). Sorry I didn’t get good pictures of you Ben (Posing took place after you left) and no pictures of Julie, Mr. Bud and Mrs. Claudine. I’m horrible when it comes to remembering the camera while everyone is together!

Taylor and Ben (Left), Paul manning the fire (Center), and Gavin, me, Kathy, and Taylor (right)

We have a great evening full of good food, laughter, beating dogs off before they beat us, and reliving old stories. The next morning, as we are preparing to leave, and after Paul had gone to work, I receive a call. Paul is installing security equipment at Ingram Books, which just so happens to be the distributor of my books. Sara, a worker there wants to meet me and ask that we stop by on the way out of town.

TN_Ingram
Me and Sara inside Ingram!

Thank you for meeting me Sara! I can’t wait for my return and look forward to the promised tour of the facility. After a final farewell to my brother, Kathy and I get back into the rental and continue our trek north.

Tennessee Titans Stadium and the Kentucky State Line

MEMPHIS, IN

Monday, March 19

IN_IMG_4415

Next stop, Michael and Beth Duczeminski’s home in Memphis, Indiana. We pull into their driveway and out they pop, wearing full Team Fist Bump gear!

IN_KMBGroup

Michael, Kathy’s brother, is a native New Yorker that moved to Indiana after retirement to be closer to his two daughters and grand kids. They live a quiet life and this is just what Kathy and I need after going nonstop since our flight to Florida, ten days earlier.

Soon after our arrival one of the daughters, Jennifer, shows up with her family. Husband Ryan, who played an instrumental roll in getting the pumping systems updated around New Orleans, after Hurricane Katrina showed the world how inadequate they were, son Nathaniel, who will one day play college soccer (Just my opinion), two daughters Marin, who will one day find a career in dancing, Ella, who is also an amazing soccer player, and son Wil, a cutie pa-tootie (Per your Aunt Kathy). We kick back and enjoy warm conversation while the sounds of children wrestling and playing can be heard in the back ground.

IN_Jen

They don’t stay long because they have a flight to catch in the morning for Texas. They are going to meet Ryan’s parents for a little vacation. We give hugs and bid farewells until the next time.

The next day we rest! Oh, that feels so good. Snow comes, followed immediately be 17 cardinals that invade the bird feeder in Michael and Beth’s back yard. No more shorts but beautiful scenery!

That evening we go out for some steaks at Longhorn then slowly make our way back to the homestead. We get to bed early with full bellies. Tomorrow we set off on our next leg of the journey two hours to the north.

Michael and Beth remind me so much of ourselves. They are quiet, love the outdoors, and revolve their lives around family. Good people I am proud to call family.


NOBLESVILLE, IN

Wednesday, March 21

IN_Sara

Kathy’s niece, Sara, is sporting her Team Fist Bump armor when we arrive. The rest of the gang is working or at school so we sit around and chat. It doesn’t take long before school buses can be heard dropping kids outside. They arrive separated by grade: Ben the eldest and quite possible a future Bass Master Elite Fisherman is first, followed soon after by Sam, the baseball star and Eli, the little cutie, pa-tootie (Kathy’s words Eli so don’t hold a grudge big-guy). Later that evening Jason arrives home after a long day at work, making certain former bad guys are staying on the path to good guy-ism.

This is a young family going through the typical young family way of life. The three boy’s constant wrestling brings me back to the days of me and my brother at their age. I can’t help but wonder if Jason gets as aggravated with them on long road trips as my father use to :).

Sara and Fmly

On Thursday, the father and kids head off for work and school. Sara hangs out with us. Since Kathy and I are leaders of a team (Kathy’s Team Fist Bump) and we will be taking part in the American Cancer Society’s Relay For Life event in Pine Bush, NY this June 2nd, we busy ourselves which fundraising business. This is a big deal!

Since Kathy’s diagnosis, we have learned first hand how important and wonderful this organization is. For those that can’t make the event and want to help our team reach it’s goal click here and donate as little as $5 to help find a cure for cancer. It is beyond easy and only takes 1 minute. Or you can join our team by clicking here and set yourself a goal. It is recommended that you set a goal of $100 and if you raise this amount you will receive a Relay T-shirt!

That afternoon everyone comes home and me and Ben, the oldest son, take off to visit the Bass Pro Shop located 5 minutes down the road. This kid loves fishing and really empresses me with his technical knowledge. We have a good time. Can’t wait to do some fishing with this guy!

The next morning we load the car and set forth on the final leg of our journey – Home Bound!

IN_Cracker Barrel
This is a familiar restaurant to anyone traveling the interstates. You simply must try the pancakes. The best I ever had!

One note worthy event happened to us in Ohio. Frank Jr., of F&F Industrial Equipment in Middletown, NY called me and explained that he and his family (F&F Industrial Equipment is a family owned business) would be happy to sponsor Kathy’s Team Fist Bump in the Relay for $250! This caused us to ride through Ohio on a cloud.


 

JOURNEY HOME: MIDDLETOWN, NY

Friday, March 23

It is a long drive home. Bitter-sweet is as good a way as any to describe it. We already miss our families tremendously, but there was no denial in the fact that our comfortable seats at home were calling our names.This final leg of the journey was completed by two people without an ounce of stress within themselves. The 2,700 mile trek which is nearing it’s completion had been spent entirely with loved ones – just what Kathy and I needed after the months of stress we have endured.

We stay over night in a hotel just west of Scranton, PA, leaving early in the morning for the remaining 2 hours of our trip home. On Saturday, March 24, 2018, around noon, in Middletown, NY, there was one very happy cat!


SESSION 5: IMMUNOTHERAPY

Tuesday, March 27, 2018

Session5
My beautiful, strong wife Kathy, heading into Memorial Sloan with War Bear sitting on Love Pillow guarding her back for Session 5 of Immunotherapy.

We arrive at Memorial Sloan Kettering around 9:00 AM. The night before, at the Hyatt House, was peaceful, relaxing, and fun. We had a good dinner and better breakfast, then headed on down the road to get ‘er done.

We are early because Kathy will be seeing a pain management doctor today. Her hip has been bothering her in the region of the bone cancer so we want to rule it out as the cause and get the pain back down to nil.

The doctor is very friendly and decides to send Kathy to a Physical Therapist to work out the muscles in this area. We will make an appointment for next week to begin PT.

When Dr. McFarland sees us he tells Kathy that all blood work looks good. Other than the hip pain everything looks good so he sends us off to the treatment waiting room.

Kathy’s name is called and we follow the lady to Treatment Suite #16. The nurses come in and get the Pembrolizumab flowing. While Kathy listens to country music I begin calling from the list I had put together of local businesses that I’ll try to persuade to sponsor our team for the Relay For Life event. Out of the fifteen I call, ten sound interested and request that I email them the information. In the week following I never got one call back, blahhhh.

Treatment finishes up and we decide to stop off on the way home to visit the grand babies. We stay for a couple hours then head home – Grand baby Fix satisfied. We predict Kathy will come home early from work tomorrow given the past side effects after treatment so we go to bed shortly after we get home.

Vacation over – Time to resume the fight!


LETTER TO POTENTIAL TEAM SPONSORS

To Whom It May Concern,

 

My name is Michael Hoard, Team Captain of Kathy’s Team Fist Bump. Our team will be participating in the American Cancer Society’s Relay For Life event in Pine Bush, NY, on Saturday, June 2, 2018. I am writing to humbly ask for your business’ support in sponsoring our team. I am attaching the RFL sponsor form where you can see the different sponsor levels and the benefits offered for each.

Kathy’s Team Fist Bump was born soon after my wife Kathy was diagnosed with Stage 4 Lung Cancer in November of 2017. Our team was nurtured from the beginning by friends and family that stood beside us, giving us strength as we set off on this new and terrifying journey. Today we have hundreds of members from around the globe.

On the day of the event, Team Fist Bump will have a tent set up where we will feature several authors, including myself, that will be autographing their books. All profits from book sales will be donated to the American Cancer Society. Throughout the day, Kathy will join members of our team on the track, proudly representing Team Fist Bump.

While your donation will help ensure our team’s success for the event I would like to share a couple of benefits to your company as well:

  • All donations businesses make are tax deductible.
  • The American Cancer Society offers a comprehensive benefits package to all sponsors. What would be a better way to promoting your business than partnering your name with finding a cure for cancer?
  • Team Fist Bump has a Facebook page with hundreds of followers that will see your name when we announce sponsors.
  • My author website/blog has over 4,400 followers. I will add all sponsor names to the ‘Events’ page of my website.
  • Following the event, I will publish a blog article detailing the day – emphasizing that the success of this event was a direct result of the generosity of the businesses and individuals that took part.
  • This will not be a one-time deal for Team Fist Bump. We plan on attending all events that we possibly can. Your name can be a part of us as we grow and become known to more and more people!

Please feel free to contact me with any questions. Team Fist Bump looks forward to joining hands with your business in finding a cure for this awful disease! Please share this letter with any friends of yours that might want to become a member of our team as well!

 

With Kindest Regards,

Michael Hoard

Team Captain: Kathy’s Team Fist Bump

EM: mwhoard@yahoo.com

SPONSORSHIP FORM LINK

RFL 2018 One Page Sponsorship Pine Bush

KATHY’S TEAM FIST BUMP FLIER

Flier
American Cancer Society Relay For Life Kathy’s Team Fist Bump June 2, 2018 Pine Bush, NY

 

 

 

 

 

OUR JOURNAL: Lessons, Love, & Fighting This Bastard Called Lung Cancer! Session 3&4-Immuno/CT Comparison (February 13-March 6)

GoFundMe

https://www.gofundme.com/teamfistbump

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)Session 2-Immunotherapy

Entering
My courageous, beautiful wife making her way into Memorial Sloan Kettering Cancer Center for her 3rd Session of Immunotherapy

Tuesday, February 13 – Session 3 of Immunotherapy.

We wake up in the Hyatt House, White Plains in good spirit. I am still upset over being foolish enough to fall victim to a scammer the day before. We start the day off by calling the police so they can file an official police report for bank reimbursement purposes. The officer is friendly and says he will go down to speak to the manager.

As predicted the breakfast is delicious and nutritious. We really enjoy sharing this meal in such beautiful surroundings. We joke around and talk about the day to come. We are excited about presenting Dr. McFarland and nurse Lauren with Official Team Fist Bump t-shirts this morning.

We get the truck loaded and start our 1.5 minute drive to Memorial Sloan Kettering. We do the regular check in, Kathy is called back for Lab work, and at 12:40 PM Kathy’s name is called for our escort to the exam room Dr. McFarland will see us in.

T-Shirt For Dr
Kathy caught unaware as we wait for the doctor to enter the exam room. Notice the two Team Fist Bump t-shirts spread out and waiting to be presented to our heroes!

Dr. McFarland enters and is genuinely appreciative of being presented a Team Fist Bump Tee! Kathy officially indoctrinates him by offering her fist, which he enthusiastically bumps with his own. He is now officially a Team Fist Bumper! Nurse Lauren is busy so we have to give her her shirt later.

Getting down to business, Kathy explains that her cough is now completely gone. After listing to her breathing he can find nothing bad to tell us.

Our next visit to see him will be the biggy. It will include a CAT scan the day before or morning of our next visit. Then he will be able to tell us if the cancer has stopped, slowed down, shrunk, or continued to grow unimpeded by immunotherapy.

KEEP THE PRAYERS COMING!!

We finish up with him and head over to the treat suites waiting area. Kathy is called in and assigned Treatment Suite #17. We settle in by getting her Pandora radio going and set it to the Tim McGraw Channel. The nurses come in and get the drip going. As always, they double check to insure no mistakes with dosage or drug are made. The second nurse hears the music and comments that she gets down with country too. This part is starting to be a relaxing time for us. Thirty minutes later the procedure is complete. We pack up and head for the truck and our drive home.

We stop at the half way point for our sandwich at Starbucks and enjoy each others company. The drive home is pleasant. It is nice that somethings are becoming normal and we know what to expect. Kathy is a veteran now. One tough cookie!!


Wednesday, February 14 – Kathy goes to work at her usual time. I am starting to fall into the nonworking husbands sleeping habits. I had always awaken between 3-4:30 AM when working. Now I find myself sleeping until 7 or 7:30.

The reason this perturbed me today is because it’s Valentines Day and I wanted to give her the chocolate covered strawberries I had stashed in my man-cave. I move them to the fridge for her to find later.

The strawberries don’t have long to wait. By 9:00 AM Kathy is feeling drained by the treatment. She comes home and stretches out on the love seat to nap throughout the day. She does manage to devour two of the strawberries, while insisting that I take one. She doesn’t have to work all that hard at persuading me. 🙂

Around 3:00 Kathy insist I go to join my old writer’s group that I haven’t taken part in since Kathy’s diagnosis. I figure it will give Kathy a chance to relax in peace in quiet so I go.

Once there, I discuss me and Kathy’s idea to turn these journals into a book. I have no desire to continue The Adventures of Nick and Billy at present. The idea is received with enthusiasm by the person I talked to. I think I will start on it soon!


Thursday, February 15 – Kathy is able to work all day.

We visit Kathy’s mom’s house where her brother cooks a spectacular prime rib (Anyone wanting the recipe just ask by clicking here!). I can’t wait to cook this for Kathy and myself some time down the road!


Friday, February 16 – Kathy goes to work all day. She is feeling good.


Saturday-Monday, February 17 – 19 – We enjoy a long weekend because Kathy is off on Monday for President’s Day. We spend 80% of this time marathoning the series Blacklist on Netflix. We are definitely getting hooked!


Tuesday, February 20 – Kathy returns to work (Blahh) and is able to work all day (Yayyy). We have come up with an idea to help others cover cancer related expenses by attending their fundraisers where we will autograph books and donate all profits to the individual or organization holding the event! We are stoked!!

I contact Memorial Sloan Kettering Cancer Center first and am awaiting a reply to my email.

Next, I contact the American Cancer Society. What a great conversation I have with them. They are forwarding my information to their office in my region. She thinks Kathy and I might be helpful in several fundraisers they put on annually. Crossing fingers for this!


Wednesday, February 21 – Kathy goes to work and works all day!

I contact Cancer Care, concerning Team Fist Bump assisting them with fundraisers. They are concerned that our idea will add an unwanted “carnival-like atmosphere” to their events. I send them an email proposal stating Team Fist Bump isn’t your average manufacture wanting to ply their wares. The Founder of this group has Stage 4 Lung Cancer – a person your organization states they are out to help. We shall see if we can get on board!


Thursday, February 22 – Kathy goes to work and works all day!


Friday, February 23 – Kathy goes to work and works all day!


Saturday/Sunday, February 24/25 – We hang out together and marathon Blacklist on Netflix.


Monday-Friday, February 26-March 2 – Kathy goes to work and works all day/everyday!

Monday – Kathy and I visit Meyer Tool Inc., where I work and hand out a bunch of Team Fist Bump member t-shirts. I give Kathy the t-shirt and tell her the name of the person she will be presenting it too. She hands it over with a big hug. What a great day with lots of tears. Kathy loves everyone she meets. Such a beautiful group of people. Thank you!

MeyerTool
Three members of Team Fist Bump from Meyer Tool Inc. There are another 20 or so that I was unable to post in this picture. We love you guys and gals!

Throughout the week I continue searching for individuals and organizations that Team Fist Bump might be able to assist in their fundraising endeavors.


Saturday, March 3 – We video the drawing of our Team Fist Bump appreciation gift! Congratulations Rhonda of Dothan, AL!!

Resource/Info link mentioned in video for those newly diagnosed with cancer: Diagnosed With Cancer, What Now? Team Fist Bump Shares Their Experience.

Our Son-in-Law, Wolfie, brings the grand babies over to visit. A bad northeaster came through and their home was hit bad, which included their home loosing power.


Sunday, March 4 – Wolfie returns with the babies. He has tripped and burned his arm and hand on the wood burning stove in his home. He’s keeping an eye on it before going to the clinic. He’s a paramedic so I suppose he’ll know when it needs medical attention at a level greater than what he can manage.

We have a good day of visiting!


Monday, March 5 – Kathy goes to work. She will be getting off at noon. Today we head for Memorial Sloan Kettering for a CT scan. This CT will be used to compare with a CT taken a few days before Kathy’s first treatment session with immunotherapy. We are hoping that the tumors have stopped growing.

I pull into Walmart and as I am putting on my walking boot for my broken foot, my phone rings. It is Tina, with the American Cancer Society. She has read Team Fist Bump’s proposal and thinks we can be a fantastic part of the Relay For Life Event coming up in June! When I get home I tell Kathy, who has just returned home from work. She is very excited!

More details of this event can be found by clicking here. If you are interested in representing Team Fist Bump at this event, or any other, please “Follow” this blog so you can be contacted as new events are added! Also, for those members that plan to represent Team Fist Bump at an event, and have not yet received a t-shirt, just let me know and I’ll order you one (or more) at cost, which I can present to you at the event. These shirts will be offered at cost, between $7.50 – $10.50, depending on how many join up to take part. Also, please give me the sizes you require. Available in Men’s, Lady’s, and Youth sizes.

We depart at 2 PM, stop at our usual McDonalds for a couple of breakfast sandwiches, then arrive at the Hyatt House by 3:30 PM. Kathy is just as excited by our room as always. We have a little time to kill before departing at 4:45 so we unpack and chill.

We arrive at Memorial Sloan Kettering around 5:00 and are soon led to the radiology waiting room where Kathy is given a raspberry flavored drink to prep for the CT with contrast. After she finishes this she is taken back to receive an IV injection of something else needed for the CT. At 6:00 she is taken back for the scan.

Afterwards, we head back to the hotel where we just make it in time to enjoy the free dinner provided for guest. Once in the room Kathy pulls out a blanket that she covers us with on the sofa where we sit quietly watching TV until 9:30 when we go to bed. We have a lot on our minds this evening…praying that we receive happy news tomorrow.

A busy day lies ahead!


Tuesday, March 6 – The BIG day! To find out if these past 3 sessions of immunotherapy have been working for Kathy.

I wake up around 5:30 to start catching up on this blog. Kathy and I realize that this is an important one for Team Fist Bump, and don’t want you to wait long for the results.

Kathy soon joins me in the living area of the suite. She watches news while I type away. At 8:00 we head down for a fantastic breakfast spread set out for guest. Nervous conversation takes place over our eggs, sausage, fruit, and oatmeal. We are ready!

MichaelHyatt
Me taking a break from writing this blog long enough for Kathy to take a picture:) We had about an hour before we had to leave for Memorial Sloan Kettering.

At 12:10 we arrive at Memorial Sloan. Kathy goes in for Lab work and I guard our seats in the waiting area. She has no problem with a fast heart rate so she rejoins me quickly.

Me&KathySloan
Kathy and I sitting in the waiting room. Anxious to learn the results of using the drug Keytruda.

At 1:50 we are led into the examination room where Dr. McFarland, Kathy’s oncologist will meet us and share the comparison results using the CT scan she took last night.

Kathy&Dr
Kathy with her Oncologist, Dr. McFarland. He had walked in sporting his Team Fist Bump member t-shirt.

Dr. McFarland walks in wearing his Team Fist Bump member t-shirt which gets Kathy extremely excited. She jumps up and gives him a hug. This guy is definitely Team Fist Bump material!

He takes his usual place at the desk, I take my usual seat by the door, and Kathy sits on the high-dollar examination chair. Kathy says, “Well doctor, what’s the results.”

This is the moment we had been waiting for. Scared to hear what he might say. Hoping to hear that the growth has stopped completely. A slight grin gives it away and much of our worries melt away.

“Well Kathy,” he says. “There is significant shrinkage in all of your tumors. One of them was resolved, meaning it is no longer visible on the CT scan.”

Kathy starts bawling and says, “Doctor. give me a hug.” I sit there giving Kathy thumbs up and yayyyy’s. The room is lighter than I’ve ever felt it! The doctor goes on to explain the tumor sizes, which I have added below for you to view:

Comparison Image

The doctor goes on to say that perhaps in the future (6 months or so), he will set Kathy up with a radiation oncologist to zap out the smaller tumors of the lymph nodes. He also says that Kathy will receive another CT scan after 3 more sessions of immunotherapy to hopefully see continued shrinkage of the tumors. At this time she will also receive another PET scan to confirm that the cancer has not spread further. So now we have another big date to count down for:) Always a BIG day ahead!

The doctor tells Kathy she will be getting Zometa, along with the Pembrolizumab at today’s treatment session. Kathy says, “Let’s do this!” Nothing can dampen the mood in this room right now! Dr. McFarland discusses setting Kathy up with a pain management doctor on our next visit in 3 weeks. Kathy’s sciatic nerve is acting up.

The doctor walks out, and as we are getting our secret weapons to behave (War Bear has been acting up a lot today. He’s constantly trying to get out of the back pack he shares with Love Pillow), the doctor comes back into the room and says to Kathy, “I almost forgot the fist bump.” He sticks his fist out and Kathy seals the deal!

We head over to the treatment suite and after a short wait we are led to Room #17. This time is spent sharing with family the great news we had just received. The 45 minutes here go quickly. Kathy is unhooked, and we head out to the truck for our drive home. We even by-pass the Starbucks we usually stop at. We have pizza at home and I’m itching to work on this blog so I can publish it tomorrow!

We get home, walk inside, and give each other a gigantic hug. Team Fist Bump prayers have worked! Thank you all!!!

 

Diagnosed With Cancer, What Now? Kathy’s Team Fist Bump Shares Their Experience.

Having yourself or a loved one diagnosed with cancer is a terrifying ordeal. Confusion, fear, and uncertainty make all physical movement seem clumsy and jerky, as if your brain is in shock, making communication with your nervous system impossible. Sudden flash-backs to happy moments in your life collide violently in your mind with flash-forwards of the possible dark, lonely days and nights ahead.We Do Not Know How Strong We Are

Within the first few days of learning about the cancer, I think it is important for the caregiver and patient to start building a plan to fight it. Stop looking up “cancer” and “life expectancy” on google! This will throw a wrench in your ability to cope and accept this nightmare. Wait for your doctor to learn more about your tumor and discuss it with you! Then do your research.

Once the shock wears off you can start preparing for the battle. Here’s a list of steps we took from diagnosis to the first session of treatment. With this you will get an idea of the agonizing steps you must take before treatment begins. Do not think it will be a quick process; it is slow and agonizing!

We understand the fear you feel and want to make this as simple and stress free as possible for you.  Please understand that this is not a MUST DO list. I did a lot that first week because I felt a need to get this done to speed up Kathy’s first treatment session. Not all of you have time to do what I did. Adjust it to your schedule and use what you want, discard the rest.

At the end of this publication we have included links to the US News top 20 cancer centers of 2016, various organizations we contacted, and organizations that might be able to help you with travel, flights, and housing on your trips to receive treatment. Also included are notes I jotted down during communication with these organizations.

We hope this helps! Please feel free to contact me with any questions you might have. Click here to send me an email with your question.


Week 1:

  • Have the doctor that diagnosed your tumor set up an appointment ASAP for a biopsy.
  • Begin building your support system: Tell your family and close friends. You WILL need this! I can not stress enough how important the prayers and words of encouragement from around the world have been for us.
  • Tell you employer: Hopefully your employer will be as awesome as mine and Kathy’s. Not only did they treat us as humans, but in both our cases they said they had our backs and to not worry about our jobs.
  • Contact Cancer Centers: Do your research and find a nearby cancer center that you feel will be a good fit for you. The places I contacted said they couldn’t make an appointment until after a biopsy had been done and a pathology report created. Be sure to go ahead and give the person you are talking to all the patient’s insurance information so they can get started on creating a file for you or your loved one. Also, ask them what additional information they need you to fax them in order to get the ball rolling ASAP.
  • If you do not have unlimited funds contact your bank and explain your situation. I was able to secure a low interest line of credit that only charges interest on the funds I use. It is very similar to a credit card, but without the 18% – 25% interest rate many charge.
  • Begin prepping for a fundraiser encase it is needed: You should have this prepared encase you need it down the road. I may have a low interest line of credit but I do not want it to build too high a balance and cause BIG problems down the road. You can also look into having shirts printed up as part of your fund raiser. You will be surprised by the number of family, friends, and strangers that want to help you out.
  • Invest in a good day planner that has calenders and additional space for notes. You will be writing down a lot of dates, observations, and instructions. It will not be a waste of money.
  • Be prepared to find out just how powerful your love is. Spend all the time you can with family.

Week 2:

  • Plan your rolls in this battle: In Kathy and my case, we decide that Kathy’s only job will be to fight this cancer with every core of her being. My responsibility, as husband and caregiver, will be to deal with insurance companies, finances, doctor appointments, and procedure appointments.
  • Create your own private support group. We decided to start Team Fist Bump, which is our own private group open to anyone willing to say a prayer, give a hug, fist bump, or send an inspirational message Kathy’s way. We have hundreds of members today that we keep in touch with through social media. Kathy and I receive a ton of strength just by reading comments left on our Facebook post we put out allowing the “team” to follow Kathy’s progress and experiences.
  • Have the Cancer Centers you have in mind contact the hospital where the biopsy was, or will be done, and your primary doctor to request all medical records so they can add this to the medical file they are building on you. Remember to double check with them that this has been done.
  • Hopefully you will be able to have the biopsy done during the first week. In our case the biopsy did not occur until the second week. At which time I told the hospital where the biopsy procedure was taking place that our cancer center of choice (Memorial Sloan Kettering Cancer Center), requested that I drive the pathology slides to them once they have been made available. I was told when and where to pick them up without any problems. I also request that the pathology report be faxed to Kathy’s primary doctor and Memorial Sloan Kettering Cancer Center. Be prepared to wait a long, nerve-wracking 3-4 business days for the pathology results of the biopsy. Note: Be sure to find out the specifics of the pathology slides your cancer center requires. I brought stained and had to make another trip to bring unstained.
  • Be prepared to find out just how powerful your love is. Spend all the time you can with family.

Week 3

  • After the pathology results are in and slides/reports have been received by your primary doctor and cancer center of your choice, you need to check on whether a PET scan will be needed. If so, get this scheduled as soon as possible. While the cancer center of your choice might make an appointment with you now that the cancer type has been verified, a treatment plan can not be put together until the PET scan. This procedure will show if the cancer has spread from where it originated. Once this is done your cancer can be staged and a treatment plan put together. The radiology report usually takes just one business day to complete.
  • Ask yourself if you might like to have a back up, local oncologist on stand-by should the need ever arise. Kathy and I are trying to cover every angle of this battle. We do not want to chance an emergency coming up in the future with our only option being to drive over an hour to Memorial Sloan Kettering Cancer Center. We want an oncologist that works out of our local hospital that has a fantastic emergency room only 15 minutes from our home.
  • Begin a journal. This is helpful when discussing symptoms and mental state with your doctors. It is also a good form of therapy. Not just for the patient, but the care giver as well.

Week 4

  • If your PET scan shows that the cancer has not spread then the cancer center should be able to tell you what your treatment plan will consist of. If the cancer has spread then they may want to go in and do another biopsy. Kathy’s PET scan revealed that the cancer had spread to a half dozen lymph node along her trachea and the pelvis region – more specifically, in the marrow of the  ischium bone.

During this week, because the pathology reports of Kathy’s cancer have been received and reviewed by Memorial Sloan we are finally able to make our first appointment there. Our oncologist wants to start chemotherapy, but not until he sees the pathology report of  the mass in her pelvis.

We ask the doctor if he is going to biopsy 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.

  • Ask your oncologist if he can have further molecular testing done on the pathology slides to sub-categorize the type. This testing showed Kathy’s cancer to be of the KRAS mutation. Now we can be added to a data base that will be used to help other individuals down the road with this same type. The testing might also come in handy when treating your cancer.

Below you will find links provided by the American Cancer Society where you can gain a better understand of this:

Tests for Non-Small Cell Lung Cancer (see “Molucular Tests” section)

https://www.cancer.org/cancer/non-small-cell-lung-cancer/detection-diagnosis-staging/how-diagnosed.html

Targeted Therapy Drugs for Non-Small Cell Lung Cancer

https://www.cancer.org/cancer/non-small-cell-lung-cancer/treating/targeted-therapies.html

>General Informaiton about Molecular Testing and Cancer:

Cancer in the Twenty-first Century (see “More targeted therapies” section)

https://www.cancer.org/cancer/cancer-basics/history-of-cancer/twenty-first-century-and-beyond.html

Personalized Medicine: Redefining Cancer and Its Treatment

https://www.cancer.org/latest-news/personalized-medicine-redefining-cancer-and-its-treatment.html

Tests used on biopsy and cytology specimens to diagnose cancer (see “Molecular genetic tests” section)

https://www.cancer.org/treatment/understanding-your-diagnosis/tests/testing-biopsy-and-cytology-specimens-for-cancer/special-tests.html

If you have any questions or need additional information, please visit The American Cancer Society or call their National Cancer Information Center at (800) 227-2345.  Cancer Information Specialists are available 24 hours a day, seven days a week to assist you.

Week 5

  • We attend a consultation with the doctor that will be performing the bone biopsy on Kathy’s hip.
  • If you need to stay a night near the facility you might want to ask the cancer center if any local hotels offer discounts for patients. If they do give you a discount code always ask the hotel for their regular rates also. At times, because the hotel’s prices fluctuate, the regular rate might be cheaper than with the discount code.

We chose to do this for several reasons. Although the drive is only a little more than an hour away the satellite facility we use is still in a suburb of New York City. The traffic is horrendous and we don’t want to chance an accident causing us to be late and possibly miss an appointment. The second reason is because it gives Kathy a chance to get a good night sleep only 3 minutes away from Memorial Sloan Kettering. Arriving well rested and refreshed has become very important to us both.

  • Two days later the procedure takes place. Kathy feels nothing during the procedure and is sore for a week after. Nothing she can’t handle though. The pathology report will take 3-5 business days.

Week 6

  • Kathy is still sore from the bone biopsy but able to work.
  • We meet with our oncologist, whom gives us the pathology results of the bone biopsy. In Kathy’s case the mass in her pelvic region has originated from the mass in her lung. They are both the same type, adenocarcinoma. We are told that her cancer has reached Stage 4.
  • Ask your doctor if the PD-L1 level has elevated past 50%. We are told that the lung pathology report shows she has a cancer produced protein called PD-L1 elevated to a level of 80%, which puts her over the 50% level and qualifies her for Immunotherapy (Definition: Treatment of disease or other disorders by strengthening the body’s immune system). A relatively new treatment using the drug Keytruda, which does away with many of chemotherapy’s nasty side affects. Clinical trials show an impressively high percentage number of halting the tumor’s growth, and in some cases shrinking the cancer cells.
  • Whatever treatment you will be receiving, ask your doctor if you can have a more resent CAT scan taken just before your first session of treatment. This image will be used to compare with a future image taken after you have gone through several sessions of treatment to see if the tumor growth/growths have slowed down or stopped completely.

In Kathy’s case, she will receive three sessions (each being three weeks apart) and just before the forth session she will be given another CAT scan which will be used to compare the tumor sizes with the last scan taken a few days before she started treatment.

  • Our doctor’s answer to the question, “What is our ultimate goal here with this treatment? Our best case scenario?”

Answer: “Kathy will always have the cancer in her body. Therefore she will need to receive treatment for the rest of her life. The purpose of the treatment will be to stop the cancer cells from multiplying, stop it from spreading, and hopefully shrink it.”

Week 7

  • Germ proof your home and practice good hygiene. We bought numerous bottles of Purell to carry on our person for trips outside of home and one bottle sitting next to our front door for guest to use before entering.
  • As the days and weeks slowly, and oh so agonizingly slip by, you and your loved one might be lulled into a false complacency. You begin to adjust to the new norm of your life which involves lots of hugs, doctors visits, searching for aide of one form or another, and continuing as much of your normal routines as possible. We have discovered that the brave fronts we have put on throughout this ordeal are starting to unravel. No matter how tough you think you are, your mental health will suffer. Be prepared for breakdowns.There are so many hard questions that need to be asked. Look into therapy as a means to effectively deal with painful topics such as the future. The future? By far, this is the most difficult topic for us.
  • Finally! 46 days after Kathy’s diagnosis her treatment will begin. 1st session of immunotherapy!
  • Her only side effect has been fatigue felt the day after treatment sessions. After the first day she has felt completely normal, physically.

Below you will find a valuable list of resources that can help you:

US News Lists Top Cancer Hospitals for 2016

The US News rankings use four measures as part of the total score: reputation with specialists (27.5%); survival (37.5%); patient safety (5%); and other care-related indicators, including nurse staffing (30%).

  1. University of Texas MD Anderson Cancer Center, Houston
  2. Memorial Sloan Kettering Cancer Center, New York City
  3. Mayo Clinic, Rochester, Minnesota
  4. Dana-Farber/Brigham and Women’s Cancer Center, Boston
  5. UCLA Medical Center, Los Angeles
  6. Moffitt Cancer Center and Research Institute, Tampa, Florida
  7. Seattle Cancer Care Alliance/University of Washington Medical Center
  8. Cleveland Clinic
  9. Johns Hopkins Hospital, Baltimore
  10. UCSF Medical Center, San Francisco
  11. Massachusetts General Hospital, Boston
  12. Hospitals of the University of Pennsylvania-Penn Presbyterian, Philadelphia
  13. Stanford Health Care-Stanford Hospital, California
  14. Northwestern Memorial Hospital, Chicago
  15. Barnes-Jewish Hospital/Washington University, St Louis
  16. University of North Carolina Hospitals, Chapel Hill
  17. New York–Presbyterian University Hospital of Columbia and Cornell, New York City
  18. USC Norris Cancer Hospital-Keck Medical Center of USC, Los Angeles
  19. Wake Forest Baptist Medical Center, Winston-Salem, North Carolina
  20. City of Hope, Duarte, California

Organizations For People With All Types of Cancer

If you need help you must get busy and start searching. DO NOT count on one organization for several reasons. You might make too much money, you might have a disease not on their coverage list, you might live too close to the treatment center, or they may have run out of funds. Most importantly however, this cancer is yours or your loved ones. No one will feel the urgency you do to get things in motion. It is your responsibility to find help and get things moving. You might have to say things your not use to saying in order to speed some lackey up in his/her job. Do it! This is a battle and your the general.

First, do your research, then grab your phone, pen, and pad. Make sure you wont be disturbed, and start calling. Good luck and remember that you are not in this alone. Mine and Kathy’s prayers are with you all!


OUR JOURNAL: Lessons, Love, & Fighting This Bastard Called Lung Cancer! Session 2-Immunotherapy (January 23-February 12)

GoFundMe

https://www.gofundme.com/teamfistbump

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)

Saints Game
On one of our 1st dates! When the Saints were running out of the tunnel, fireworks forming a path for them to follow onto the field, I looked over to Kathy and saw tears running down her cheeks. Competing with the awesome sounds of screaming fans, I asked her what was wrong. Her reply was, “That’s the most beautiful thing I’ve ever seen!” That’s the moment I fell in love with this woman.

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.

Beach
A beautiful picture of Kathy representing Team Fist Bump…Fist pumping the cool, salty air of Rhode Island!

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!

Paying It Forward The Best Way We Can!

My wife, Kathy was diagnosed with Stage 4 Lung Cancer last November. We have formed a support group for Kathy called Team Fist Bump and have quite a large following. We also publish a blog, OUR JOURNAL: Lessons, Love, & Fighting This Bastard Called Lung Cancer! Our most recent publication outside of the journal, Diagnosed With Cancer, What Now? Kathy’s Team Fist Bump Shares Their Experience, shares with those just starting down this terrifying path the knowledge, road blocks, false expectations, and organizations we studied and talked to between the day of Kathy’s diagnosis and her first session of treatment. Our blog site already has 2,900 views and over 4,400 followers! Perhaps Team Fist Bump can join hands with your organization or individual fund raising event to raise money to cover cancer related expenses.
Kathy has received great joy by attending my past author events, so what I propose is that Team Fist Bump join hands with your organization or individual event by setting up a table and autographing my two published books to help you raise money. I will purchase these books at a discount from my publisher so these sales will not contribute to my sales or author ranking stats in any way. I will purchase them at $5 and sell them for $10 or $12. I will need to keep $5 a copy to cover my expenses but the profits of $5-$7 per copy sold will go to your fundraiser. We realize that you do not want to create a carnival like atmosphere where various vendors set up tables and ply their wares. Please consider that this is all about bringing joy to my wife, helping out your fundraiser, and allowing Team Fist Bump members to take part in your event (I will certainly post these events for our “team” to see).
If you have any questions or need clarification on anything please feel free to contact me anytime.

Below, you will see the two books I will bring to your event. Click the titles for descriptions and reviews:

100a

The Adventures of Nick and Billy: The Mystery of the Rougarou

A Forsaken Soul Cover EBook Final

A Forsaken Soul

We are willing to attend fundraisers within 200 miles of Middletown, NY. Special circumstances may allow me to travel outside these areas, so contact me anyway! Please understand that my wife is currently undergoing cancer treatment so this offer is only available to those that have events when my calendar is free.

 

 

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All Events at book stores this year will be put on hold, unless a portion of your profits from my sells will go to the Lung Cancer Research Foundation, The American Cancer Society, or St. Jude Children’s Research Hospital.

Please share this publication so it can be seen by someone it might help! Thank you!!


If you, too, would like to show the world that you are a Team Fist Bump Member we can ship you as many as you like. The cost is $15 each, plus $5 shipping ($5 shipping is not per shirt, but per order). Here are three ways that you can place your order:

  • GoFundMe – Visit Team Fist Bump’s, GoFundMe page and make a donation in the amount your shirts will cost (plus shipping if applicable). BE SURE to add in comments: “T-shirts,” along with the quantity and sizes in your order.
  • PayPal – Use your PayPal account to send your payment to my account: mwhoard@yahoo.com. Because I use this account to process book orders also, please BE SURE to add in comments: “T-shirts,” along with the quantity and sizes in your order. Also, make sure your address is included.
  • Cash – Many of you work with Kathy and me, or live near by. If you would like to save in shipping fees just flag one of us down or give us a call.

If you have any questions feel free to email me by clicking here. I’ll get back to you as soon as I can.

Just a reminder that these t-shirts are in Adult sizes (I haven’t got them in Ladies yet). If we run out, your order will be added to a list for the next order I place.

Also, please send pictures of you wearing the shirts so I can start adding them to Our Journal. We would love to see how far Team Fist Bump has spread from it’s home base in Middletown, NY!

Bill_Nancy

In Montgomery, NY, our dear friends Bill and Nancy are the first to receive their official Team Fist Bump Member T-shirts. Wear them proudly!!!

 

OUR JOURNAL: Lessons, Love, & Fighting This Bastard Called Lung Cancer! Week 9-The New Norm (January 13-22)

GoFundMe

https://www.gofundme.com/teamfistbump

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)

Pit Entrance
Kathy and I enjoying our first ever Nascar race. Here, we are enjoying the benefits of Pit Passes – right at the entrance to Pit Row.

This Publication of Our Journal-Week 9, marks a change. Because we are now settling into a normal, albeit different lifestyle, we have decided it would be better, and much less boring to the reader, if we start replacing “Week (so and so)” with “Session (so and so)”. This means the publications will now be released every 3 weeks instead of weekly.

So, for this final weekly journal, we will keep it short. Here are a couple of things we want to share:

Saturday, January 13, 2018, Kathy has a slight sore throat. She’s a little warm but temperature doesn’t get to 100°. She never gets worse and is feeling better the next day. So, nothing to worry about.

Throughout the week Kathy goes to work. Her cough persist but does not get worse. The cough suppressant is doing it’s job.

We both fear the side effects might get worse, causing her to be taken off immunotherapy. So far, so good though.

Monday, January 22, 2018, Kathy is working a half day. We will be leaving for a hotel near Memorial Sloan Kettering this afternoon. Kathy’s 2nd Session with immunotherapy will take place tomorrow, Tuesday, January 23, 2018.

I call Kathy at work and catch her at a very emotional moment. She shares with me some new changes she has noticed in her body. The first being that her cough is no longer a little light surface cough but one that is coming from “deeper” in her chest. She also noticed last night that sleeping on her stomach makes it difficult to breath. This is new to her and it is scaring her. We will discuss this with the doctor when we see him tomorrow.

A few hours later, we arrive at the Extended Stay America Hotel. The nightly rate was cut in half when The American Cancer Society contacted them and made our reservation.

We go to a local diner for dinner then return to the hotel where we retire early. Tomorrow will be a busy day…

 

 

 

 

OUR JOURNAL: Lessons, Love, & Fighting This Bastard Called Lung Cancer! Week 8-Team Fist Bump is Intensifying (January 6-12)

GoFundMe

https://www.gofundme.com/teamfistbump

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)

Me & KAthy @ Moon's
Just one of the many Adventures Kathy and I have shared. This picture was taken by a very dear friend, Moon. It shows us on the bow of his boat as he is transporting us to his camp (Kamp Kouillion) , hidden deep in the swamps of southern Louisiana.

Saturday, January 6, 2018 – Both Kathy and I have learned that browsing through support groups on line can be painful and terrifying – neither of us are ready for this yet, if in fact, we ever will be. I did, however, join the Facebook group, Cancer Sucks. My plan is to do nothing more than share a link to this journal with them for others to use if they like. It didn’t take long to receive a comment from a lady in Australia who told us a little about her experience using Immunotherapy. Her diagnosis is Stage 4 lung cancer (Same as Kathy) and it has spread throughout her body even more than Kathy’s. Here’s what she has to say on the subject of Immunotherapy:

“I have stage 4 lung cancer I suggest you research immunotherapy. My tumor has shrunk from 7.4 cm to 3.5 cm and I have mets (metastasized) to the spleen, liver and right hip. They think the one on the hip has gone and the spots on my liver have nearly gone and the ones in my spleen (2) have shrunk. I feel well and am doing everything I did prior to diagnosis. My husband was very teary at first but he’s so happy I’m improving.”

Inspirational stories like this are just what the doctor ordered. These stories, prayers, and well wishes make a very powerful drug all in themselves! Go Team Fist Bump!!!

– 2:00 PM, Kathy and I journey to Lake Mahopac, in order to celebrate Little Christmas with the kids. Danielle, Wolfie, Kathryn, and Isabella host a dinner that we (Kathy, Katie, Lou, and myself) thoroughly enjoy.

There’s something about spiral ham, mashed potatoes with gravy, corn, and mac-in-cheese being passed between family members at a dinner table that just makes the world a fantastic place. We followed this dinner up with a dangerously delicious lemon cake created by Katie. Full bellies and family, what a great evening it was.

Everything was absolutely beautiful. Except I have noticed Kathy’s cough is more frequent. She thinks it might be the cold, dry air NY is having to put up with at present. I sure hope so.


Sunday, January 7, 2018 – We enjoy a day together. Kathy prepares dip and fills bowls with chips. The high-light of this day is watching the New Orleans Saints whoop up on the Carolina Panthers for their first game of the playoffs. A great day!

Kathy is fatigued from the treatment.


Monday, January 8, 2018 – 7:00 AM, Kathy goes to work.

– 9:00 AM, after visiting my office to get my short term disability paper work started, I decide to work the phones a little, in behalf of Kathy. I don’t think I’ll ever stop looking for ways to make things easier for Kathy.

Originally, my plan is to call several of the contacts that I had received from different organizations. But I never get passed my first call. It is to Cancer Care, (800) 813-4673, where I speak to Rick. He is a social worker that has been working at Cancer Care for 20 years. This guy is very easy to talk to and more than willing to help me. It surprises me when he ask how I am doing, as a care giver.

This has happened once before and I realize that I had forgotten to mention it in the journal for that day. It was on New Years Eve Day. As we were getting ready to leave for Momma North’s house for my Birthday Celebration, my dad calls to see how we are doing. He has been a caregiver for my Step-Mother, Barbara, for over a decade. He wants to know if I am okay. He shares with me the importance of staying healthy (mentally and physically) in order to be a good caregiver. I have thought much on this since the call and am planning to get a physical in the near future. Thanks dad.

Back to the present…Rick and I talk for a good half-hour and it does me a world of good. This is the first time that I realize therapy might be helpful to me. I have been thinking that I am handling this well, but am amazed at how good it feels as this guy effortlessly works to unravel the confusion and worries I have wrecking havoc in my mind. He helps my thinking to become focused and clear again. Attention caregivers: Give these people a call. It is worth it!

As we continue talking, and he goes into further detail about his organization, the most impressive thing I learn about is it’s virtual workshops, that cover about any subject you can think of. FYI, every workshop you find on this site is hosted by a renowned oncologist or other professional dedicated to helping cancer patients and their families. To register for upcoming workshops click here. If you would like to browse the countless workshops that they have archived click here.

Cancer Care does not offer lodging assistance. However, they do, “offer limited financial assistance for cancer-related costs such as transportation and child care, and our oncology social workers can help you find resources.” Also, on this page you will find helpful links in finding other resources.

Rick emails me an application to fill out for a 1 time/$100 travel assistance grant. He then gives me a few more contacts to check out:

Joe’s House is a 501 (c) 3 non profit organization that was created by Ann W Calahan in memory of her late husband Joe. Joe battled cancer for six years, having treatment in Texas and New York. Finding a suitable place to stay was a challenge and after Joe’s death in 1997 Ann vowed to find a way to help others in the same situation. In 2003 Joe’s House website launched and fulfilled that promise.

Joe’s House website lists thousands of places to stay across the country near hospitals and treatments centers that offer a discount for traveling patients and their loved ones.

The Healthcare Hospitality Network, Inc. (HHN) is a nationwide professional association of nearly 200 unique, nonprofit organizations that provide lodging and support services to patients, families and their loved ones who are receiving medical treatment far from their home communities.

Patient Advocate Foundation’s Patient Services provides patients with arbitration, mediation and negotiation to settle issues with access to care, medical debt, and job retention related to their illness.

Financial Aid Fund, This independent division of Patient Advocate Foundation provides small grants to patients who meet financial and medical criteria. Grants are provided on first-come first served basis and are distributed until funds are depleted. Qualifications and processes for each fund may differ based on fund requirements. Patients who are interested in applying for financial assistance should start by calling this division toll free at (855) 824-7941 or by registering your account and submitting an application online here.

Co-Pay Relief, The PAF Co-Pay Relief Program, one of the self-contained divisions of PAF, provides direct financial assistance to insured patients who meet certain qualifications to help them pay for the prescriptions and/or treatments they need. This assistance helps patients afford the out-of-pocket costs for these items that their insurance companies require.

Specialized CareLine Programs, In addition to PAF’s core services, they operate these additional dedicated programs to meet the needs of patients. These programs are supported through grants and partnerships.

In addition to these resources, Rick also gives me some contacts that are fantastic groups for caregiver to caregiver assistance.

My Cancer Circle is a free, private community to help support caregivers of people facing cancer.

Imerman Angels provides FREE personalized one-on-one cancer support for cancer fighters, survivors and caregivers.

Imerman Angels was created on the belief that no one should have to face cancer alone and without the necessary support. At 26 years old, Jonny Imerman was diagnosed with testicular cancer and began his fight against the disease. Throughout his experience, Jonny was lucky enough to have loving support from his family and friends but had never met anyone his age who was a cancer survivor. He wanted to talk to someone just like him, someone who truly understood, and was intimately familiar with his experience. In short, he was looking for someone who had already faced the same type of cancer. This was the beginning of Jonny’s vision and in 2003, it became a reality when he founded Imerman Angels.

After speaking to Rick, I highly recommend that any caregiver or patient feeling the stress or depression associated with this disease call them. There is absolutely no chance that the person who answers your call is not a licenced social work trained in helping people with our problems. Give it a shot, I’m certainly glad I did.

– 3:30 PM, Kathy gets off work. When she comes home she tells me that during the day, while walking down the hall, she breathed in a mist from something like Febreze. It caused her to go into a coughing fit that lasted about 15 minutes.

While coughing into her hoodie, she constantly watched for signs of blood. None was visible, but a lesson was learned. She must be mindful of her surroundings and keep clear of any and all fumes. She’s okay, but was definitely scared by the experience.

For supper we eat crab cakes, and nap in front of the TV until bed time. She is pretty tired tonight.


Tuesday, January 9, 2018 – 7 AM, Kathy goes to work. Nothing out of the ordinary occurs. She comes home, we eat, shoot the bull, and go to bed at old people hours.


Wednesday, January 10, 2018 – 7 AM, Kathy goes to work. The rest of the day is a copy of yesterday. Ordinary in every beautiful way.


Thursday, January 11, 2018 – 7 AM, Kathy goes to work. I am continuing my little projects that have become the norm to me since my inability to return back to work.

– 12:52 PM, I call Kathy at work. She tells me that she has had a persistent cough all day, that is becoming quite bothersome and concerning. She explains to me that it starts with a tickle in her throat and is a dry cough. I tell her I’m calling Memorial Sloan Kettering.

I get through to Dr. McFarland’s office and pass on the information that Kathy had given me. I want to know if I need to bring Kathy to the hospital. The lady says that she will pass this on to the people who need to know and I’ll be getting a phone call back later.

– 3:45 PM, Kathy is walking in the door when the phone rings. It is a triage nurse from Memorial Sloan Kettering. She ask if Kathy has a temperature. After explaining that Kathy has just walked in the door she tells me she will call back in 5 minutes. “Have her take her temperature.”

Kathy does, it is 98.5°.

The nurse calls back and I hand the phone to Kathy. After the nurse learns that there is no fever she begins asking more questions: do you have a chill, a shortness of breath, dizziness, etc.

Kathy is able to answer no to all questions. The nurse thinks that all this coughing is a side effect of the drug Pembrolizumab (Keytruda’s generic version), that she received during treatment. The nurse reassures Kathy that this is not uncommon.

We both breath easier, but I learn later that Kathy’s imagination will be causing her a lot of panic this evening.


Friday, January 12, 2018 – 7:00 AM, Kathy goes to work.

Weather will be getting worse throughout the day so I make a run to the store. On the way home I call Kathy at work. This is when she tells me about her fears the night before.

Last night, while I was out cold on the sofa, Kathy’s imagination was taking her to bad places. She was terrified that I might have to take her to the hospital and a determination would be made that she would no longer be given Immunotherapy. Because of this she was praying that the cough was nothing more than a cold – something she can easily cure before resuming treatment.

I reassure her that the cough is a common and minor side effect; that the only way they will take her off of this drug is if it were doing something seriously bad, like destroying her liver. She knows all of this, and reminds me that this is how her mind can take her to scary places. I totally understand.

– 9:54 AM, I open Face Book and see that I have been tagged, along with Kathy, in a post from a family member who teaches school in Connecticut. This school holds a morning prayer broadcast to all of the classrooms via an intercom system. The video below is but one example, out of hundreds, where Kathy is being remembered in prayer. Team Fist Bump extends into the Heavens!

– 1:00 PM, Kathy comes home from work and lays on the love seat, trying to take a nap. She is feeling tired and achy. After a while she tells me that she might be able to nap if she eats something. She wants to make me my all time favorite, omelet and home fries (favorite only when she makes it!).

I offer to make us an omelette, and she says, “You can’t make it like me.” I offer to go pick something up. She says, “I don’t want you going out in this weather.” So, I give in with a smile, and say, “Fine, I wont argue no more. I’m getting some of Momma’s eggs!”

It’s amazing how good her home fries are! After we eat she seems to feel better.

I am now watching my UPS app for when our Team Fist Bump T-shirts will be dropped off. We are planning to deliver a couple of these shirts to Bill and Nancy, good friends that we haven’t seen since before Kathy’s diagnosis. We have visited family recently, but not friends, and I am looking forward to hearing some of Bill’s vulgar stories. We were suppose to go on a double date (we all celebrate our wedding anniversary around the same time so this was to be our anniversary dinner) to the Texas Road House, but this never happened.

– 4:00 PM, Bill text me that he and Nancy have been going through a nasty sinus infection. He didn’t want to put Kathy in jeopardy of catching anything. We postpone the visit.

– 5:30 PM, Official Team Fist Bump t-shirts are delivered! They look great! Here’s a picture of our family wearing them and a clear image supplied by the printer.

If you, too, would like to show the world that you are a Team Fist Bump Member we can ship you as many as you like. The cost is $15 each, plus $5 shipping ($5 shipping is not per shirt, but per order). Here are three ways that you can place your order:

  • GoFundMe – Visit Team Fist Bump’s, GoFundMe page and make a donation in the amount your shirts will cost (plus shipping if applicable). BE SURE to add in comments: “T-shirts,” along with the quantity and sizes in your order.
  • PayPal – Use your PayPal account to send your payment to my account: mwhoard@yahoo.com. Because I use this account to process book orders also, please BE SURE to add in comments: “T-shirts,” along with the quantity and sizes in your order. Also, make sure your address is included.
  • Cash – Many of you work with Kathy and me, or live near by. If you would like to save in shipping fees just flag one of us down or give us a call.

If you have any questions feel free to email me by clicking here. I’ll get back to you as soon as I can.

Just a reminder that these t-shirts are in Adult sizes (I haven’t got them in Ladies yet). If we run out, your order will be added to a list for the next order I place.

Also, please send pictures of you wearing the shirts so I can start adding them to Our Journal. We would love to see how far Team Fist Bump has spread from it’s home base in Middletown, NY!

Bill_Nancy
In Montgomery, NY, our dear friends Bill and Nancy are the first to receive their official Team Fist Bump Member T-shirts. Wear them proudly!!!

 

 

 

OUR JOURNAL: Lessons, Love, & Fighting This Bastard Called Lung Cancer! Week 7-Immunotherapy (December 30-January 5)

GoFundMe

https://www.gofundme.com/teamfistbump

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)

Café du MondeMe and Kathy enjoying beignets at Café du Monde, New Orleans, LA

Saturday, December 30, 2017 – Today is my birthday, 50 years certainly has flown by! Today, at 51, I am saddened by the realization that the pages in my book of life seem to be skimmed over much to quickly. It seems impossible today, when looking back to my teen years, a time when my biggest goal was to reach the title of Adulthood, time could have seemed to be crawling by as slowly as a herd of snails through a field of peanut butter. I can recall, many times in my past where I wished days, even weeks away. Wanting nothing more than to reach that one planned day, such as a vacation or fishing trip. Thinking on it now, those wished away days are days to be treasured.

I must change the subject now…my manopause is kicking in!

This day is a quiet one spent hanging out with my Baby and receiving Happy Birthday calls from friends and family. There is also a bunch of Happy Birthday wishes posted on Face Book that I must respond to.

A couple of communications stand out to me. One is a call from my sister, Sandy, who is driving home from New Orleans. She mentions that she shared Our Journal with a friend of hers in Texas, that is struggling with the reality of cancer in a loved one. Sandy tells me that her friend called her, thanking her profusely for sharing Our Journal with her. It was very inspirational and helped with some of the difficulties she was facing.

After hearing this, both Kathy and myself realize the power in what we are doing. It somehow makes the difficulties in recreating and sharing our own pain, worth it.

The second thing that stands out to us is a text message I receive from my step-mother, Barbara, who has been battling this disease for more than a decade. I’m not sure how many football fans are reading this, but there was a fantastic running back for the New England Patriots named Kevin Faulk, who hails from my home town of Lafayette, LA.

It just so happens that when Barbara was in the hospital, back in 2005, her nurse, Kevin Faulk’s Aunt, told her a poem that she has never forgotten. It goes like this. “God who calms the stormy seas, calm the storm inside of me.

It’s amazing how a collection of words can create something as beautiful as any Picasso painting.


Sunday, December 31, 2017 – New Years Eve! Today we are determined to start preparing for the treatments Kathy will be starting soon. The biggest thing is to keep any infection from her. We purchase a large bottle of Purell that we place just inside our front door for any guest we might have. Kathy carries a small bottle in her purse and I’ll need to start carrying one once I am able to return to work.

Later, we go to visit Kathy’s brother and mom. Stan, Kathy’s brother, cooks us a fantastic steak dinner followed by a Happy Birthday song to me, and dangerously good cake. Kathy hasn’t seen her mom since she took that fall on the same day I broke my foot. It is some good visiting time for her.

We go home and I decide to add the link to our GoFundMe page to these blogs. It’s not easy for either of us but we have no idea what the future holds in regards to finances, and with my broken foot I do not want to build on my loan (while increasing the interest) with no money coming in from me to take care of it monthly. The lesson I learned many years ago, from getting charge-happy with my first credit card has never been forgotten.


Monday, January 1, 2018 – The day starts off with a New Years Wish. We cant tell you or it might not come true. Kathy wakes me up at 11:50 PM for the big ball drop on TV. We watch, do the count down aloud, then give each other a hug and kiss after making our wish.

A few hours later, we wake up and decide to make the big move, by posting our GoFundMe page on Facebook. Almost instantly, the GoFundMe app I have on my phone starts chiming.

Kathy says, “It sounds like the little bell that rings on It’s A Wonderful Life, every time an angel receives it’s wings.”

I need to tell you. Every one of you that made the bell chime this day, and everyday since, has brought Kathy to tears. We are simply overwhelmed with heartfelt gratitude. This is the last time I will mention this fund. I do not want it to sound like prayers, inspirational comments, and well wishes are any less valuable to us – these are what give us strength and courage to face the challenges along the path we are currently on.

Thank you ALL! We love the members of Team Fist Bump!


Tuesday, January 2, 2018 – It’s been 46 days since we sat in Dr. Fruchter’s office and learned of Kathy’s lung cancer. FINALLY, treatment will start today!

The day starts with me going to work. I take off my CAM Boot, replace it with my steel-toe work shoe, and hobble in to show my boss that I can work light duty, while remaining within the safety parameters set by my company. Long story short, I am told that I can not return to work, at least until after my followup doctors appoint in two weeks. I will need to return with a letter from my doctor, clearly stating the I can resume my “full duty” assignments. The letter must also specify that it is okay for me to be on my feet for 10 hours a day and climb stairs while wearing steel-toe shoes. Blahhh! I leave to prepare for our trip to Memorial Sloan that afternoon.

1:00 PM, we arrive at Memorial Sloan Kettering, and Kathy is taken in for vitals and to have blood drawn. Her heart rate is fast so she practices a breathing exercise that a nurse on the cancer ward of ORMC taught her, and soon has the rate down to normal.

See returns to the waiting room to explain this to me. We believe her heart rate was fast because we had just gotten off the congested highways that lead to Memorial Sloan Kettering – giving credence to our theory that a night in the hotel before arriving here is just what she needs before each treatment session. We didn’t stay in the hotel the previous night because checkout is noon and the appointment wasn’t originally until 1:45. Kathy didn’t want to sit in the waiting room that long, which we end up doing anyway. We would start shooting for earlier appointments in the future, if at all possible.

We learn that Dr. McFarland is running behind schedule so we remain seated in the waiting room. While there, at 2:00 PM, I receive a call from Sara, a member of an organization called Acts of Kindness. This organization is sponsored by The Oncology Nurses Associations of Orange and Sullivan County. Sara informs me that this organization offers a 1 time only, $100 gas card, to locals that are under going treatment for cancer.

Kathy and I are once again shocked by the generosity and compassion we are receiving from others. These ladies, these oncology nurses, probably some of the same ones that I had been rude to on the cancer ward of ORMC, were willing to come out of pocket to help Kathy get to treatment. Sara tells me that she will leave me an application at the Cancer Center front desk of ORMC. I tell her I will be there to fill it out the next morning.

Kathy is crying again; I sit there stunned.

3:00 PM, we are taken to an examination room and meet Nurse Lauren, who answers questions and explains some of what Kathy should expect from the drug Pembrolizumab (Generic form of Keytruda).

Soon after, Dr. McFarland enters to talk more about Kathy’s treatment plan. He mentions that another drug, Zometa, will be added to her regular treatment every 2 months. Because Kathy has osteoporosis, this drug should help strengthen the bones and keep the cancer from spreading throughout the marrow.

Kathy ask, “If the treatments work and the cancer is shrunk down and kept under control will I need to keep coming to treatment.”

I remember a similar question was asked the last time we came here. The answer the doctor gives is the same answer I remember him giving in the past. “Kathy, the cancer will remain in your body and you will need to continue this treatment every 3 weeks for the rest of your life.”

Jesus, this is never going to be easy to hear. I am inspired as Kathy straightens her posture and exclaims, “Then we will do whatever we have to.” She has mentally prepared herself and is ready to go to battle with this bitch and her little bastards!

After another stint in a waiting room, located in the treatment section of Sloan, we are led to Room 6, her treatment suite – a private room where we are given a short lecture by Nurse Trish, who will be inserting the IV for Kathy’s 1st treatment. The treatment will take 30 minutes, enough time to receive a 200mg dose of Pembrolizumab.

Trish calls in another nurse to double check that Kathy’s name is on the medication bag and all forms are correctly filled out. All checks out good. She injects the needle and starts the drug flow. Finally!!

Kathy is in good spirits. We have Trish take our picture and then Kathy kicks back to listen to country music on Pandora. I sit back to inform Danielle and Katie of their momma’s progress. Then I share our picture to all the members of Team Fist Bump on Face Book.

Ist Treatment

As promised, her 1st session ends after 30 minutes. We leave the room and work on setting her next appointment – it will be on 1/23/18.

We drive home in good spirits, holding hands.

Note: The Featured Image for this publication of Our Journal is a poster that describes how Immunotherapy works. Click here to see it more clearly and to read a very cool article by IBM on the new technology they are putting out to help fight cancer.


Wednesday, January 3, 2018 – Kathy goes to work at her regular time of 7:00 AM.

8:00 AM, I hobble into the cancer ward of ORMC. As promised, Sara has left me an application from The Acts of Kindness organization. I sit down in the waiting area and fill it out. After I have completed it I return it to the desk. Sara told me the day before that the organization’s officials would review the application next week, and if approved, would mail us the gas card. More angels!

I glance around the room and take in the half dozen people sharing it with me. Half are in pairs, the others are sitting by themselves. Please don’t let them have to be going through this alone, I think to myself. I leave the building and hobble back to my truck.

12:30 PM, Kathy leaves work early and returns home. She is tired. She didn’t sleep to good last night. One side effect of the treatment is insomnia, but Kathy thinks it was just stress. She curls up on the love seat with a blanket over her. I sit on the sofa working on my computer.

I visit Kathy’s portal for Memorial Sloan Kettering to see if a time had been set yet for her next treatment date on 1/23/18, I notice that a few new medical reports have been added. I promised Kathy in the past that I would never keep anything from her, so I read the reports for the first time out loud. Two of them tell us nothing new, but the third causes us both to pause for thought.

It is the CAT scan report for the scan she had the previous week, Thursday, December 28th. The whole purpose of this scan was so they can use it in comparison with the one she will be receiving in approximately 9 weeks, after 3 sessions of Immunotherapy, to measure the progress. Apparently, in this report, they used this latest scan in a comparison to the CAT scan Kathy had on 11/15/17, two days before Dr. Fruchter gave us the news that Kathy has Cancer.

The report shows the measures taken in both scans (6 weeks & 1 day apart) and compares them: The original mass (The Bitch) has grown slightly, but the thoracic lymph nodes (The Little Bastards) have been in a growth spurt. Not large, still tiny, but definitely growing at a scary pace.

For family and friends that read this, please understand that growth was expected. Do not fret. The important comparision will take place in 9 weeks, after treatment.

Come on Pembrolizumab, work your magic!


Thursday, January 4, 2018 – 7:00 AM, Kathy is able to go to work. I stay home again.

I call The Cancer Resource Program (From United Healthcare) to inform them that Kathy’s chemotherapy has been changed to Immunotherapy. I learn that I do not need to inform them of all things treatment related. One less worry, I love it!

Next, I do some research and make some calls. What I am seeking is travel and lodging assistance. They are all friendly and more than willing to help. I learn to ask them if they might offer additional assistance, besides what I have requested. Many also offer free wigs and might be able to cover your co-pays and drugs. Here’s some places I called and notes I took:

  • American Cancer Society (Ask for the Hotel Partner Program) – (800) 227-2345. Notes: On your first call they can create a patient file. They’ll then request you call them at least 5 days prior to the day you will need the room. They will search the area of the treatment center for free/discounted room. They found a room for Kathy and I, for Kathy’s next scheduled treatment, regular $109 discounted to $49.
  • American Cancer Society (Ask for Help in your area) – (800) 227-2345. Notes: They can offer you some great resources located near your home. All you have to do is ask. Very friendly and compassionate in their work.
  • Patient Advocate Foundation – (855) 824-7941. They are closed due to weather. Notes: American Cancer Society tells me this organization offers a 1 time/$300 Grant. I was unable to verify details by this journal’s publication day.
  • Cancer Care – (855) 824-7941. They are closed due to the weather. Notes: I had issues getting through on the phone but eventually did. The link will take you to the site.
  • Cancer Support Community – (888) 793-9355. Called and spoke to a representative. Notes: Ask for TAG Grant information – Gas card program, possibly worth $200. To qualify your combined gross household income must be below $39K.
  • Good Days – (877) 968-7233. I was unable to verify details by this journal’s publication day.

While doing some further research I found some valuable links on the site for The Cancer Resource Center of The Finger Lakes. This site also offers a page that list Organizations similar to theirs by state, click here. Take it from someone that has spent many hours researching this subject, These links are gold!

The following links are a must see for all cancer patients that live any distance from the cancer treatment center:

BUS

FLIGHTS

LODGING

If you need help you must get busy and start searching. DO NOT count on one organization for many reasons. You might make to much money, you might have a disease not on their coverage list, you might live to close to the treatment center, or they might have closed down. First, do your research, then grab your phone, pen, and pad. Make sure you wont be disturbed, and start calling.


Friday, January 5, 2018 –  7:00 AM, Kathy goes to work but knocks off early – she is tired. She didn’t sleep good last night.

Later this evening, while hanging out together in the living room, Kathy request that I share with all of you an app she has on her iPhone. It has been of great help to her in quitting smoking. It’s called Quit It.

Here is a good description of the app that I found online: “Quit It Lite is a motivational app designed to support and encourage smokers to stop smoking and help ex-smokers to stay smoke-free. Through the use of a basic and straightforward interface, you can input your smoking habits and costs per pack to view metrics of cigarettes not smoked and dollars saved.

The app’s health section lists the benefits of quitting smoking along with a percentage bar that shows in real time when you will achieve them. For example, there are progress bars that signal when your blood pressure and pulse rate, as well as carbon monoxide and oxygen levels, will return to normal, and the time until your risk of heart attack will decrease and your lung function will increase.

You can define your goals as an incentive to keep going, with anything from a cappuccino to a movie or musical ticket, and the app counts down until you have achieved your reward.”

According to this app, Kathy quit smoking 5 years, 3 months, 17 days, 18 hours, and 37 minutes ago. One of the greatest motivators within this app that helps her stay quit is a feature that measures the progress of her body returning to normal. Here is what the different categories say about Kathy’s progress:

  • BLOOD PRESSURE – 100% Accomplished – Back to normal.
  • TEMPERATURES OF HANDS AND FEET – 100% Accomplished – Temperatures have increased back to normal.
  • CARBON MONOXIDE AND OXYGEN LEVELS – 100% Accomplished – Both levels are back to normal.
  • BETTER BREATH – 100% Accomplished – Smokers breath is gone / Kissing is fun again!
  • RISK OF HEART DISEASE DECREASES – 100% Accomplished – Only 24 hours after your last smoke, your risk of a sudden heart attack decreases.
  • SMELL AND TASTE – 100% Accomplished – Nerve endings begin to regenerate and your sense of smell and taste begin to return to normal.
  • LUNG FUNCTION INCREASES – 100% Accomplished – Your circulation improves and walking becomes easier, even your lung function increases by 30%.
  • LESS SYMPTOMS – 100% Accomplished – Your overall energy typically increases and symptoms like coughing, nasal congestion, fatigue, and shortness of breath diminish.
  • SPERM QUALITY – Obviously not for Kathy, but if you are a man your sperm count increases. There is also an impact to the mobility and overall quality of your semen.
  • HALVED THE RISK OF HEART DISEASE – 100% Accomplished – Your risk of coronary heart disease is half that of someone still smoking.
  • HALVED THE RISK OF LUNG CANCER – 100% Accomplished – The lung cancer death rate decreases by nearly 50% compared to 1 pack/day smoker. The risk of cancer to the mouth is half that of a tobacco user. Note: I chew tobacco but will quit in the next couple of days.
  • PRECANCEROUS CELLS ARE REPLACED – 53% Accomplished – Your lung cancer death rate becomes similar to that of someone who never smoked. Precancerous cells are replaced with normal cells. Your risk of stroke is lowered, possibly to that of a nonuser. Your risk of cancer to the mouth, throat, esophagus, bladder, kidney, and pancreas all go down. Kathy would have accomplished 100% in 4 years, 8 months, and 13 days!
  • HEART ATTACK REDUCTION – 35% Accomplished – Your risk of coronary failure becomes similar to that of someone who never smoked. Kathy will accomplish 100% in 9 years, 8 months, and 13 days.

If you noticed the comment I made about quitting tobacco in the next few days, this decision was made while typing this data from Kathy’s app. I hope it affects some of you just as it did me.

 

OUR JOURNAL: Lessons, Love, & Fighting This Bastard Called Lung Cancer! Week 6-Acceptance of Learning The Stage (December 23-29)

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)Week 4 (The Oncologist) , Week 5 (Bone Biopsy)

Gator

Saturday, December 23, 2017 – Kathy is sore today because of the bone biopsy she went through yesterday. Our plans are to relax in our home while enjoying each others company.

This is not to be. As I am bringing my laptop down the stairs to read my rough draft  to Kathy of Our Journal Week 3, I misjudge our last step and fall face first onto the floor. I try to lighten the moment by stating, “At least I saved the computer.”

This doesn’t go over very well with Kathy. Sometimes my humor isn’t released to brighten the world at the right moment and she quickly points out just how important to her my computer is. Whew, that Polish/Irish blood is passionate!

Long story, short, my foot is broken. I know it as soon as I try to take a step. Kathy breaks out the frozen peas and we ice it for a bit. Because Kathy is still sore from her own medical troubles, I am able to walk slowly on my heel to my truck and drive myself to the hospital. At the hospital I get an x-ray and splint, then an appointment for an orthopedic specialist on Tuesday, December 26th.

If this isn’t bad enough, I call her when I am on my way home and she is in tears. Her 90 year old mother has fallen and they are waiting for an ambulance at Kathy’s brother’s house.

Hours later, we find out she did not break any bones. She did receive a nice bump to the back of her head and a deep bruise to her back that will be quite painful for several more weeks.

When it rains it pours.


Sunday, December 24, 2017 – Christmas Eve. Danielle, Wolfie, and the twins arrive, followed by Katie and Lou for our annual family gift exchange. The afternoon is filled with laughter, love, and good snacks. The clouds fade away, and our home is filled with sunshine for a few brief hours.

A welcome reprieve for us all.

 


Monday, December 25, 2017 – Christmas Day. Kathy works 7:00 AM – noon for holiday pay. I stay home, with foot propped up. She comes home and we spend a quiet day together making and receiving Christmas Day calls from friends and family.

Spending the day together is very nice, but the cloud of truth just wont quite blow away.


Tuesday, December 26, 2017 – Kathy will work until noon today then drive me to my doctors appointment at 1:15. I spend the morning on the phone. I start off by talking to my insurance company to work out some minor issues I discovered when I visited the hospital Saturday morning.

Next, I call Memorial Sloan Kettering and discuss the hotel discount ripoff they have going on with Hyatt House. They seem surprised and promise to look into it.

Because my ability to work played a big part in paying for all of these unexpected expenses I step up my game in searching for financial assistance. My call to United Way is a great move. They are friendly and all too willing to listen to our dilemma. They give me the the phone numbers of two contacts to check in to.

The first is Cancer Care, which I call and learn is closed for the holidays. The second is Hudson Valley Cancer Resource Center, which I also call. The message didn’t say they were closed but did ask that I leave my name, number, and reason for calling. I do.

At 1:30 PM, I hobble into the Orthopedic Ward of ORMC, with Kathy leading the way and forming a protective barrier around her man’s injured foot:). The doctor is friendly and listens as I explain my need in keeping my right foot cast-free, if at all possible, because I need to drive Kathy to her treatments. He orders me a CAM Boot, which can be removed with Velcro straps and act as a walking cast once the pain starts to lesson.

I can see instant relief in Kathy. She was really stressing the timing of my superman act.


Wednesday, December 27, 2017 – After reading her FMLA paperwork filled out by Memorial Sloan she notices that it was all faxed to the Department of Labor, not the work fax number she had listed on the document. As she is reading it she notices a shocking discovery and reads it to me. While describing Kathy’s illness Sloan says, “being treated for Stage 4 cancer.” This is the first we have seen it put in writing. It is shocking.

Kathy quickly bumps back by saying shes ready to take on whatever needs to be done to fight this disease. Stage 4 in nothing but a number. She is so brave, it’s amazing. I love her! When I voice this to her, she replies, “I’m not acting brave to make you (she is able to see in my eyes the shock this news has caused me) feel better. I know between the chemo and my fighting spirit I got this licked!

She goes on to mention that in the past year, when she sits in one spot for too long her hip begins to hurt. For the first time she questions this as a symptom, rather than the pains associated with getting older.

She gathers her things and heads for work.

At 12:15, Hudson Valley Cancer Resource Center returns my call from yesterday. The lady on the phone is extremely friendly and helpful. She creates a file with the information I provide on Kathy. She tells me that they may be able to assist with travel and lodging but wants me to contact a couple of other places first to see if they can help. The two places she gives me are the American Cancer Society and Mid Hudson Financial Program  (which is a division of Cancer Care, whom I learned is closed for the holidays). This lady then tells me that she will look into other possible financial help besides travel and lodging and get back to me sometime early next week.

I decide to hold off on these calls because Kathy will be home at any minute and we will be heading for a night at the Hyatt House, to unwind before the start of chemotherapy tomorrow.

At 4:30 PM, we are entering our room at the Hyatt House. Kathy is just as excited as the first time. Instantly, she begins organizing the room. She finds all of the trash cans hidden in cabinets under the sinks and places them where she has learned we need them. Next, she begins plugging our computers into the outlets closest to where we will each sit. This was a problem the first time because we didn’t know where all of the outlets and trash cans were located. But not now, it didn’t take long for this place to become Kathy’s home-away-from-home! LOL

That evening we decide to take part in the Hyatt’s free social get together, where they serve you a free dinner. On the menu tonight: Chicken Wings! We devour these top of the line yard bird wings. It was like a date in a fancy restaurant that only served Soul Food. We loved it!


Thursday, December 28, 2017 – Unlike the first visit here, Kathy can eat and drink coffee this morning. We get dressed and head to the free breakfast bar. What a spread! It will take to long to list all the food we ate but I can tell you Kathy had a wide variety of healthy food and mine, a wide variety of healthy, and not so healthy food. We were definitely filled to the gills and ready to tackle the day.

At 10:00 AM, we arrive at Memorial Sloan Kettering and Kathy is brought back to the Lab for vitals and to draw blood. At 11:10 Am, we are taken to an examination room where we meet Nurse Lauren. She ask Kathy some questions and explains a little more about the chemotherapy she will soon be under going for the first time.

Soon after, Dr. McFarland enters. He looks at a lab report and says, “The bone biopsy shows the cancer in Kathy’s pelvic region originated from the mass in her lung. It has metastasized.” He then goes on to say, “I have a curve ball to throw you.”

Both Kathy and I instantly deflate. Please, no more curve balls! He sees our reactions and continues, “Not necessarily a bad curve ball. Actually, this is very exciting!”

As if we each have an invisible air pump with hoses connected to us, our posture straightens. Go on doctor, PLEASE!

He goes on to explain that Kathy’s lung biopsy report, created by a pathologist working at Memorial Sloan Kettering, shows she has a cancer produced protein called PD-L1 elevated to a level of 80%, which puts her over the 50% level that qualifies her for Immunotherapy (Definition: Treatment of disease or other disorders by strengthening the body’s immune system). A relatively new treatment, using the drug Keytruda, which does away with many of chemotherapy’s nasty side affects and shows an impressively high percentage number of shrinking the cancer cells in many clinical trials.

He goes on to inform us that Kathy’s lung cancer is currently in Stage 4, which we had both learned from looking at her FMLA paperwork, but up to this point, had not heard from a doctor.

I ask, “What is our ultimate goal here with this treatment? Our best case scenario?”

I can see a hesitation. “Kathy will always have the cancer in her body, and therefore, will need to receive treatment for the rest of her life. The purpose of the treatment will be to stop the cancer cells from multiplying, stop it from spreading, and hopefully shrink it. Eventually, we might look at using radiation to zap out the smaller outlying sites.”

He goes on to inform us that the Immunotherapy can not be started today because he must receive permission before starting it, but assures us it will be this coming Tuesday or Thursday. He goes on to inform us that each session will entail the drug being administered through I.V. Each session will take about 30 minutes, much better than the hour and a half for chemotherapy. The sessions will take place once every 3 weeks.

After three sessions (9 weeks), Kathy will be given a CAT scan to compare the cancer size to the previous CAT scan in order to verify the drug is working and the cancer has not grown.

I remind him, “Her last CAT scan was damn near a month ago.” Then ask, “Shouldn’t we get a new one so no false measurements are used to compare against the scan being done in 9 weeks?”

The doctor agrees with me and leaves the room to see if he can get us lined up for one.

A few minutes later a man enters to tell us to follow him. Kathy will be going straight to radiology to get a new CAT scan. While waiting for her name to be called for this scan we learn that her 1st session of Immunotherapy has been scheduled for Tuesday, January 2nd.

At 1:36 PM, Kathy is getting a new CAT scan, with and with out contrast.

She finishes up, and we return home. Lots of thoughts going through our minds.


Friday, December 29, 2017 – 6:30 AM, Kathy has gotten ready for work and is about to leave. She sits down, looks at me, and ask, “Michael, have you done any planning for the future encase I don’t make it?”

I am shocked. As my eyes feel a water pressure building, I say, “No, I can’t do that right now.”

Kathy, who always seems to have the details of daily life worked out and in order, responds, “Stage 4 is no joke, Michael. We need to plan. We can talk later.”

She goes to work and I stare at the big wall clock we have mounted above our TV. I cant believe this common, non small-cell cancer, has brought me to a point where I am absolutely terrified. I think long and hard on this as I stare at the wall.

I place myself in Kathy’s shoes. I suddenly realize that what she brought up to me this morning would cause me a great deal of stress if it were me. I have to stop being so selfish here. Be her rock. I will bring it up to her later. She doesn’t need any additional stress.

At 7:45 AM, I decide to make the calls that the Hudson Valley Cancer Resource Center requested I make two days before. One of the two contacts will not be open until after the holidays but I can try The American Cancer Society.

The lady that answers has an amazingly beautiful and compassionate voice. I explain to her Kathy’s disease and my broken foot. I go on to explain that we are seeking travel and lodging assistance. She informs me that they have a relationship with hotels located near cancer centers. This relationship is called the Hotel Partner Program.

I learn that local hotels will donate unused/unbooked rooms for free or discounted rates to cancer patients undergoing treatment. She request that I call them at least 5 days prior to a planned stay. The American Cancer Society will actually do all the work required in locating us a room to stay in!

I tell her that I will call this coming Tuesday or Wednesday, after Kathy’s first treatment session, and give her the date when the next appointment has been set for. I hang up feeling a ton of stress roll off my back, like melting snow sliding off a roof.

12:05, Kathy comes home early from work today. We decide to hit the road for a day out and about. While driving I explain to Kathy that I have been thinking about the unpleasant topic she brought up this morning and I understood her needing to have the future discussed. Kathy says we can talk about it later. She feels healthy and there is plenty of time. For now, her fighting spirit is as strong as ever and she feels healthy. Lets enjoy the day.

Several hours later, while we are still out, I receive an email from GoFundMe. If you remember from Our Journal – Week 1, I mention that I wanted no unpleasant surprises and was lining up different things to protect us in the future. One of these things was a GoFundMe page that I never shared, but apparently, was activated on the GoFundMe website. The email tells me the name of the person that has made the donation. When I show it to Kathy, she recognizes the name as one of her friends.

Had I accidentally shared it to Facebook or some other form of delivery system? I had a little panic going on at not knowing. I tell Kathy that we need to contact this beautiful person that had donated as soon as we get home so we can thank her, and ask, just how the heck she sniffed out the donation page.

When we get home Kathy looks up the number for her friend and we call, but no answer. The number is old and we are worried that it no longer belongs to her friend. Thank goodness, a few minutes later her friend returns the call. Kathy passes me the phone after thanking her profusely. I do the same and then ask the question that had me absolutely baffled.

Kathy’s friend has heard the news from work. She was curious to know if we might have started a fund raiser. While searching the GoFundMe site she found the page I had created 4 weeks earlier just encase we needed it.

After expressing my amazement, her friend goes on to tell me that I should post this fund raiser for all her friends to see. She thought it was a great idea. She tells me that we would be surprised to see just how many of Kathy’s friends would like to help. I thank her again and tell her I would put her thank you gifts in the mail as soon as possible.

Kathy had just received a $101 donation without even being aware this page was available to the public. When I discussed this page with Kathy, back in it’s creation phase, we both wanted two things included should we ever post it. 1st, and foremost, a portion of all donations going to the study of cancer. Secondly, we wanted to give thank you gifts to our donors.

Kathy’s friend has just talked me into posting this fund raiser that will be a great thing in easing many of our worries! The details on all things, including our Thank You Gifts can be found by clicking the following link:

https://www.gofundme.com/teamfistbump

GoFundMe

 

OUR JOURNAL: Lessons, Love, & Fighting This Bastard Called Lung Cancer! Week 5-Bone Biopsy (December 16-22)

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)Week 4 (The Oncologist)IMG_3950

Saturday, December 16 – 8:30 Am, I am at the window of the radiology department to pick up the MRI, CD’s in DICOM format showing Kathy’s brain. Dr. McFarland, at Sloan read the report created by a radiologist at ORMC, but wants to see the images himself and have a radiologist at Sloan create a second report.

The ladies at the window are getting to know me by sight. They wish me a Merry Christmas and lots of luck to Kathy.

Later that morning, Kathy and I head off to an old stone church up in the mountains to attend a “Celebration of Life” memorial service for Paul, Danielle and Katie’s father, and Kathy’s ex-husband. We are put in charge of the grand babies and seated in the last pew of this beautiful little church.

We were both nervous about being able to keep the babies from having a nuclear meltdown (with they are fully capable of doing:)), but, as Oma and Pops, we are ready and fairly confident we will succeed. Ten minutes into the service my lap is soaked by the little angel sitting on it. I quickly exchange babies with Kathy, who expertly begins changing the diaper of this little rascal.

Paul’s four daughters, brother, Brother-in-Law, and two Son-in-Laws give heart warming eulogies. He had good friends and family that will miss him terribly…but his legacy does live on!

The girls were fantastic. There were some excited screeches as they heard their mom, Danielle, give her eulogy, and waves from their little hands to Aunt Katie as she gave her’s. But with expertly timed lap-bounces, tickles, and gold fish crackers, Oma and Pops had a successful day.


Monday, December 18, 2017 – During my break at work I speak to Michael, the guy I had spoken to last Friday on the phone about making Kathy appointments for a consultation and bone biopsy procedure at Memorial Sloan.

He tells me Dr. Alago will be doing the procedure. We have a consultation appointment set for this Wednesday at noon. The bone biopsy procedure will be done this Friday. We will be given the time at a later date.


Tuesday, December 19, 2017 – Early this morning, while sleeping, I am awaken by Kathy’s crying in a dream – a dream that sadly, will not vanish when she wakes up. I’m heart broken and can’t get back to sleep. I get out of bed and begin my therapy – typing away on this journal.


Wednesday, December 20, 2017 – 10:45 AM, Kathy and I arrive at Sloan for our consultation with Dr. Alago. We are taken back to an examination room at 12:20 PM, and soon after, Sandy, one of Dr. Alago’s nurses comes in to take vitals and explain what Kathy can and can not do in the hours preceding the procedure. The part that doesn’t sit well with Kathy is “no coffee” that morning. She LOVES her coffee!

Dr. Alago comes in. A very friendly and compassionate man that takes Kathy’s hands when he senses that she needs human contact. I feel guilty because I can not put down my pen and pad. I can not afford to miss anything. Thank you Dr. Alago for temporarily filling in for me!

He goes on to explain that the biopsy will be performed on the ischium bone, located in the pelvic region. Dr. Alago will biopsy the largest of three locations within the pelvic bone picked up by the PET scan. The largest is about 2 cm, or the size of a peanut (outside the shell). He goes on to say that the results will take 3-5 days. which is fine with us. This  means that Dr. McFarland will be able to explain them to us when we see him next week.

On the way out, Kathy stops by the Lab for blood work. When she is done she tells me to wright down Julia’s name. It’s the lady that drew Kathy’s blood and “a fantastic angel fist bumper,” as Kathy puts it. “I must remember to always ask for her!”


Thursday, December 21, 2017 – 6:00 AM, I am at work. I will be knocking off early, at 3:30 PM, so me and Kathy can drive to a hotel near Sloan for a nice rest, followed by a  short, stress-free drive to Sloan in the morning for Kathy’s procedure.

I am a nervous wreck and can not control when my eye balls get wet. Every tool I look at, every form I am filling out, every part I am setting up to be machined, I see the same smile Kathy gives me when she calls me a jerk. These are the best ones for some reason!

At 7:25 AM, I sit on a step at the base of one of the machines I am manning. I open my journal, and for the first time ever at work, begin writing: “At work. Scared. I feel I’ve been lying to myself because Kathy is feeling so good. Reality check! Kathy has lung cancer that has spread to the lymph nodes and bone marrow of pelvis. I’m scared to death and can’t function to good @ work. I want a good cry but must remain Kathy’s rock. I’m sooo sorry Baby.”

Kathy’s day is no better. At 12:15, I go to break and see a text from her that she is leaving work. I call her and she is crying. I tell her I am leaving work now. At 12:20 PM, after letting my boss know, and having him tell me to “go, be where you need to be,” I leave.

At home, I call to make the reservation for that night at the Hyatt House. We think it is a beautiful thing they are doing by offering Sloan cancer patients a discount rate. Beware the SPECIAL rates offered by hotels located near Cancer Centers (I so hope the Owner of Hyatt sees this!). 

When making the reservation I give them the Special Rate Code Sloan provided us with, and was given a price. Since this is the only hotel that we know of located within blocks of Sloan, I have no choice but to get this room. However, before I make it final, and just for shits-n-giggles, I ask for their regular rate. The regular rate is $20 cheaper than they charge cancer patients that are being told they are getting a special discount! When I voice my disbelief in this, I am told that The Hyatt’s prices fluctuate and sometimes fall below the contracted set price with Sloan. Really? Why not adjust the Special Code to be cheaper than whatever price your fluctuating price scale currently list? Memorial Sloan needs to tear that contract up. Sloan advertises the special discounts they’ve worked out with local hotels. Your only costing the people you claim to care about more money. And most can not afford it!

If anyone reads this that knows how to make them feel the humiliation I felt  for all those families that actually paid $20 more under false pretenses, please let me know and I’ll be sure to do what I can. There are so many things broken in this country right now and one of the things that gets my goat the most is boardroom executives that sit behind large mahogany desks, devising ways to suck more money from the average Joe, while pretending to be average Joe’s themselves! Fluctuating prices my fanny, they know exactly what they’re doing! They just assume that we all take their words at face value.

4:30 PM, we are comfortably settled in our room at the the Hyatt House (The picture on top of this Blog is of Kathy in the suite’s kitchen), a short 2 minute, back road drive to Sloan. The cost is already forgotten. I am enjoying Kathy’s excitement at her first stay in a suite. I can’t tell you how many times I heard, “holly shit baby!” as she made her way through the place. It really warmed my heart to know she is so happy and comfortable where we are staying.

I decided then, that no matter the cost, she would unwind in this place, after the insane traffic infested drive, and before any treatment sessions.


Friday, December 22, 2017 – We arrive to Memorial Sloan at 10:30 AM and are taken to the change room at 12:15 PM. Just before we are to go through the doors to the women’s change area I am halted. The staff wants me to wait here so no ruckus is caused by me in there:)

Kathy comes out and we are led to a small room with a bed in it where Kathy will be prepped for the biopsy procedure. Tracy, one of Dr. Alago’s nurses arrives to insert the IV needle. Kathy, as always, closes her eyes, but I see that the needle appears bigger than the ones I’ve seen for previous procedures. We learn later that one of the drugs being used is thicker than in the past and requires a larger gauge needle. Once the IV needle is inserted, Kathy opens her eyes and silently says to me, “That hurt.” My heart breaks a little more.

A second nurse on Dr. Alago’s team, Sedrina, comes in. One of the first things she tells Kathy is, “I’m the nurse that has been known to climb in bed with a patient that is scared.” We love her right off the bat and instantly accept her into Team Fist Bump.

The anesthesiologist and Ricardo, the surgical technician come in to check some things and introduce themselves. The time has arrived for Kathy to be taken away for the bone marrow biopsy. I give her a kiss and head for the waiting room. This is such a nightmare.

2:25 PM, I am brought back to Kathy’s recovery room. She is groggy, sore at the site of the biopsy, hungry, wanting coffee, and ready to go home – not necessarily in that order!  But, most importantly, in good spirits!

Kathy’s only stressful point of the procedure was when she heard Ricardo and someone else as they were discussing the insertion point for the biopsy needle. Kathy thought it sounded like they didn’t know what they were doing. When she voiced this through tears, Ricardo brought his face right in front of hers and said not to worry in the least, “This is our way of working together.” Kathy was calmed and then she slept.

Like all procedures thus-far, she can not speak highly enough of the people involved with helping her. From two days before, at our initial consultation, we learned from Dr. Alago’s nurse, Sandy, that the doctor’s entire team refer to themselves as “The A-Team.” Dr. Alago elaborated on this team even more by telling us how all the members constantly keep each other in check and double check each others work to ensure each procedure is done correctly. That’s exactly what we wanted, and needed to hear.

So, for Team-A, our utmost thanks and immense love for you all: Dr. Alago, Nurse Tracy, Nurse Sandy, Nurse Sedrina, the anesthesiologist, Surgical Technician Ricardo, Nellie, and Francea (Cocktail Girl). For anyone not listed please forgive me. I wrote down all I could but may have not heard a name or two as mind wandered, which it is very apt to do.

As we leave, we are able to solve an issue regarding Kathy’s FMLA forms that hadn’t been faxed to her work place yet. We are told that they have been faxed.

It is time to make the drive home.