Paying It Forward The Best Way We Can!

GoFundMe

https://www.gofundme.com/teamfistbump

Kathy’s Team Fist Bump fundraiser, that’s purpose is to allow others the opportunity to bring comfort to her on road trips to Memorial Sloan Kettering Cancer Center for treatment every three weeks was, and still is a great success. The generosity shown by family, friends, and strangers has touched us both deeply, and created a desire in us both to give back the kindness shown us.

If you, a loved one, a school, or any cancer organizations are planning a fundraiser to help individuals with cancer related cost please contact us so we can help. Our plan is to attend fundraisers where we can donate the profits made by selling my autographed books to your cause (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

I am willing to attend fundraisers in the southern half of NY, western half of PA, western half of Connecticut, and northern half of NJ. 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. If interested please contact me by clicking the “Contact” tab on this website and let me know the date and location of your planned event. I will respond with more details.

 

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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 or St. Jude Children’s Research Hospital. If interested please contact me by clicking the “Contact” tab.

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

 

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.

 

 

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

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Team Fist Bump (#teamfistbump) is on a mission: These journals are being published, then shared by many in an effort to reach others needing help in understanding the obstacles suddenly thrust upon them by the diagnosis of cancer. Join our team today by sharing this journal, saying a prayer for Kathy, or giving her an electronic hug or Fist Bump along with an inspirational message in the comments. To read Our Journal’s Previous issues just click the issue you would like to see:

Week 1 (Diagnosis)Week 2 (Biopsy)Week 3 (PET Scan)

IMG_2069


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

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


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

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

 


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

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

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


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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

And it was…

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

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Team Fist Bump (#teamfistbump) is on a mission: These journals are being published, then shared by many in an effort to reach others needing help in understanding the obstacles suddenly thrust upon them by the diagnosis of cancer. Join our team today by sharing this journal, saying a prayer for Kathy, or giving her an electronic hug or Fist Bump along with an inspirational message in the comments. To read Our Journal’s Previous issues just click the issue you would like to see: Week 1 (Diagnosis), Week 2 (Biopsy).

Barner with Kathy and babies


Friday, December 1, 2017 – We return home after learning of the biopsy results in pretty good spirits. Learning that the cancer, Adenocarcinoma, is a non-small cell type, and therefore operable, is just the tiniest spark of good news we needed to hear in order to vent a good bit of the pressures that had built up. We are learning that with each venting of stress-pressure, more will be added at each bend on this path.

After telling Dr. Fruchter about Memorial Sloan’s request that he make the appointment for a PET Scan because of speed factors, his absolutely wonderful nursing assistant, Jill, leaves the room to make calls. She returns to tell us an appointment has been made for Thursday, December 7th. I then ask Jill if she can fax the results of the biopsy to Sloan which she does right then. We thank them all and head home.

Our next goal to reach is the PET (Positron Emission Tomography) scan scheduled for Thursday, December 7th. This  scan, using some sort of radioactive-glucose solution is injected and when combined with a CAT Scan, will show if the cancer has spread. From there a stage can be determined. Of course, this new stress is a biggy. The kettle slowly begins to build pressure again.


Saturday, December 2, 2017 – Memorial Sloan Kettering has an online portal available for patients to aide them in all aspects of treatment. I enroll Kathy in MyMSK.org Portal using a Patient ID# provided by Ismail. On the portal, I see a list of all items we will need to bring to our first appointment or have faxed to them ahead of time. This gives me a new purpose and challenge which I instantly start working on.

The Portal is a great idea that should be used by all patients and/or caregivers. It certainly simplifies things by reading this stuff in the comfort of your own home. If you have any questions about what you have read then click the “Message” tab and ask away. It also allows you to get ahead of the ballgame and be prepared for your appointments.


Monday, December 4, 2017 – We decide to find a local oncologist to serve as an emergency backup, should the occasion ever arise where I need to get Kathy to a doctor quickly. We do not want to be caught with our britches down at any point along this deadly path…cover every base you can possibly think of! So, I contact the office of Dr. Gnanamba Kondagunta, MD. Her name was given to us by a nurse working the oncology unit at ORMC, where we stayed overnight a couple weeks back. An appointment/consultation with the doctor is set for Wednesday, December 13, at 1:15 PM.

Kathy has been experiencing a numbness to her left cheek and gums, similar to a Novocaine injection at the dentist office. We learn that this is a symptom of cancer so we decide to call Columbia University Medical Center (NewYork-Presbyterian Hospital) and Memorial Sloan Kettering Cancer Center to see which can schedule an appointment the soonest.

Because I have somewhat of a repertoire with Sloan (Ismail), I call them first. I get Ismail’s voicemail. I explain that I had the biopsy results faxed to him on Friday, as soon as we had received them. I go on to explain that because of the numbness to Kathy’s face and gums I would be calling Columbia next to see if they can see us sooner than Sloan. I tell him that I am at work, so call me there, have me paged, and give me a date for a first appointment. I then tell him I am calling Columbia and hang up.

I call Columbia and am passed around to 3 different  people before I get transferred back to the first person I had spoken to on this merry-go-round. My break is over so I hang up. I call them back on my lunch break and am finally connected to the right person who tells me the soonest they can see Kathy is December 20th.

Ismail must have gotten my message and started working fast. He calls me back and informs me that he didn’t have a time yet, but is working hard to get us in on December 14th. I tell him to call me back with a time and hang up. A few hours later he calls to say the appointment would be at 12:00 noon, with Dr. Daniel McFarland. I tell him to make the appointment and we will be there.

The lesson learned here:  The medical staff you meet anywhere will, in most cases, prove to be angels sent to help you or a loved one, but the administration is still run like a big cooperation. Getting the initial appointment never happens as fast as you would like, but if you tell them you are calling another fantastic treatment facility and going to the one that will see you the soonest, the train does pick up a little steam. Threaten their dollar if you must, this is for your loved one’s life!

My last phone call today was to the pathology department at ORMC to arrange a pickup time for Kathy’s biopsy slides that we would be bringing to our first appointment at Memorial Sloan Kettering. The lady there tells me to swing by that evening after work to pick them up, which I do.


Tuesday, December 5th – Ismail, at Sloan calls me at work. He tells me that Kathy’s insurance has contacted them to tell them that Kathy wouldn’t be covered because Sloan was out of network. He goes on to say that our appointment might be cancelled. I tell him to not cancel the appointment, that I will call the insurance company to see what kind of games they are playing. I had spoken directly to them the week before and they personally assured me that Sloan was in-network. Ismail tells me to slow down and it would be best if I spoke to Sloan’s billing department first. He connected me…

I take a knee beside the phone I am using because of a weakness and pain in my gut that has suddenly started. Kathy is trusting me to handle this end of business and I am scared to death that I have already screwed up.

Natasha, in billing,  answers and pulls up Kathy’s info. She sees that Kathy is enrolled in United Healthcare’s Cancer Resource Program, and tells me not to worry, that this is a great program and everything is okay. She takes some information from me and officially enrolls Kathy for her first appointment at Memorial Sloan Kettering Cancer Center, on December 14th, 2017!

The evening before, while double checking that I had all required forms filled out to bring with us to Sloan, I notice that the biopsy slides they request us to bring should be “unstained”. The ones I picked up yesterday at pathology were “stained”! So, my next phone call goes back to the same lady in pathology who assures me she can have new slides ready for me. I tell her that we will be back to the hospital in two days anyway for Kathy’s PET Scan. I’ll swing by to pick them up while Kathy’s procedure is being done. She tells me that would be fine.


Wednesday, December 6, 2017 – After yesterday’s traumatic insurance scare I decide to get in touch with all involved insurance-wise. Timing my first break to coincide with business offices opening their doors for the day, I first call Dr. Kondagunta’s office to verify that our appointment is still on. All is good on their end, it was still a go! Next, for the same reason, I call Alice at the Cancer Resource Program. She assures me that Kathy is enrolled and that some paperwork has been mailed to us which will allow me access to Kathy’s information.

All components of this newly built, Fist Bumping Machine, seem to be working in perfect rhythm!


Thursday, December 7th – While getting ready to leave for Kathy’s PET scan appointment we discuss the idea of turning this journal into a book. I think it is a great idea and am excited as I tell Kathy that her name can be listed on the cover with mine as an author. We both feel that there has to be numerous people out there that can use this guide book as a therapy tool, which indeed, it has become for me.

Kathy and I arrive at ORMC around 8:30 AM for her 9:30 appointment. While checking in we learn that they have not yet received the prescription necessary for the PET Scan from her doctor’s office. We anxiously wait for Dr. Fruchter’s office to open so they can fax the script over. After a half hour it is done and we breath a sigh of relief knowing that we wont have to be delayed once again by having to schedule another appointment.

While seated in the waiting room Kathy shares with me that she doesn’t usually remember dreams, but the one she had last night kept her awake much of the night. She saw herself getting the PET scan and lighting up like a Christmas tree on the CAT image as the radioactive sugar solution, cluster at countless locations all over her body.  This is caused by the cancer cells (glucose gobblers) devouring these intentionally injected snacks. What can I say? There’s no need to speak out loud that this is a distinct possibility that we both pray does not happen.

It is about this time that we meet Sam. Her full name is Samantha. She is a Lab/Spaniel mix and her job is Therapy Dog of ORMC. This dog couldn’t get enough of Kathy. It’s like Sam sensed where she was needed and homed in on this. Kathy cant get over the concern for her she can see in this dog’s eyes. And the gentleness it shows her. I have heard of these therapy dogs but never seen first-hand their value in a hospital.

At 9:25 AM, Kathy’s name is called and we are brought back to a quite room. At 9:45 AM,  Kathy is given this radioactive glucose injection. She must remain as motionless and silent as possible, not wanting any muscles tensing up that might give false readings. Kathy busies herself by looking at pictures on her phone of Pill #1 (Kathryn) and Pill #2 (Isabella). Our grand babies for those that do not know.

About five minutes before they are going to wheel her into the procedure room I leave to run my errands around the hospital so I can be back before her procedure is complete. I go to pathology and pick up the “unstained” slides that we will need. I then call radiology to let them know I will need CD’s of both her CAT and PET scans to bring with me to Sloan. I get a voice recorder and leave a message. My work, or as much as I can get done is complete. I return to the waiting room and wait for Kathy.

About ten minutes later Kathy comes walking out with a smile. Another painless procedure for a very brave woman. My heart melts when I see her. We are told the results should be ready by the next day. We go home to wait…

Later this evening, Jill, at Dr. Fruchter’s office calls. She informs us that the results are in and request us to meet at Dr. Fruchter’s office at 930 the following morning.


Friday, December 8, 2017 – We both go to work like normal and tell our bosses that we will be leaving early for the results. Our plan is to return to work afterwards and complete our shift.

At 9:30 AM, we are escorted to the examination room where we take our seats and anxiously await the results. Dr. Fruchter enters and pulls up the PET scan report on his computer. He begins to explain that the PET scan shows 6 or 7, peritracheal and peribroncial lymph nodes seeming to be cancerous (Glucose Gobblers).

Our jaws drop.

All but one these lymph nodes are inside the chest cavity on the right side. Doctor Fruchter thinks Sloan will want to do a biopsy on the one outside of the chest cavity – at the base of the neck.

A real feeling of panic is beginning to settle in for Kathy and myself. Kathy sits there in stunned silence. I say the only thing I can thing of. “I need to get these results to Sloan immediately.” I explain that I already have the biopsy slides but never received a call back from radiology after leaving them a voice message the day before. I still need to pickup the image CD’s of the CAT and PET scans.

Jill says, “Give me a sec,” and leaves the room to shack things up in the hospital’s radiology department. God love that woman! She returns in 1.6 minutes. “Both CD’s will be ready to pick up in 45 minutes.” Thank you Jill!

As we are walking out, Kathy tells me she is going for the ride to Sloan with me. She wants to be there to keep me in check as I make my way through the chaotic traffic you find so close to New York City. Probably a good idea considering the way I was feeling at the moment.

We each return to work to explain that we are done for the day, which gives radiology the perfect amount of time to prepare the CD’s I will be picking up. In the radiology waiting room I call Sloan to inform them that we will be delivering the slides and CD’s within two hours. I am given a contact name and where to drop them off.

Thirty minutes later, two scared Nascar fans are heading south on 17. No worries though. Kathy has an uncanny ability to keep me calm. Occasionally, she had to grab the “crap-strap”, but for the most part the drive was legal.

The mission is accomplished. We return home, eat dinner, sit quietly, and discuss the two doctors we would be meeting with next week. Our local emergency back-up, Dr. Kondagunta, and Sloan’s Dr. McFarland. Both highly qualified oncologist. They will give us more answers and take away the confusion we felt at the moment.

Unfortunately, because we are publishing this piece a week late, I can tell you that these doctors will see things on the PET Scan that cause even more fear. The stress is horrible.

 

 

 

 

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

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To read Our Journal, Week 1 (Diagnosis) click here. Please share if you think these journal segments may help someone.

The second week of war on this disease is best described as a box full of slinky spring toys that have been shaken up and are completely entwined with one another. You think you know…no, you are absolutely certain of where you must get to but the road there is completely screwed up.

Kathy and I have discussed the responsibilities we each have in fighting this disease. Mine being to deal with the insurance, hospitals, finances, and setting of appointments. Kathy’s one responsibility, to beat this bastard into the dirt. We have always been a team and will continue being one.

We have also formed our own private support team…Team Fist-Bump. We have decided that this team is open to anyone willing to say a prayer, give a hug, fist bump, or send an inspirational message Kathy’s way. Join our team today!

The inspiration that led to the creation of this team comes from me and Kathy’s ritual of bumping fist rather than high-fiving. Our fist bump together a dozen times a day – every time one of us, or we as a team, has done something deserving of high praise. Our own special ritual! Amazing how something so simple can be so special and totally wonderful.Bear Creek WaterFall


Friday, November 24, 2017 – Because the kids had already made plans for Thanksgiving, they devise a plan among themselves for a second Thanksgiving dinner, on the evening following Thanksgiving day. Danielle and Wolfie host the event at their home. The youngest hostesses, the grand baby twins, Isabella and Kathryn, are there to greet Lou and Katie, and then Kathy and myself as we arrive. These little girls, I fear, will have a new nick name for the rest of their lives. (Oma) Kathy has begun calling them Pill #1 and Pill #2, solely because of how much better they make her feel as she holds them, plays with them, or listens to their young laughter.

 

The evening is wonderful. Kathy and I are so very blessed to have so much love in our lives. We talk, we laugh, we love…simple things that are much more valuable today then they seemed two weeks ago.


Monday, November 27, 2017 – Kathy and I work a half day which gives me a chance to make phone calls in an attempt to get the ball rolling as soon as possible. Kathy and I have a list of questions given to us by Memorial Sloan Kettering. These questions are for the insurance/pharmacy company so we can learn everything about the coverage Kathy will have. During these calls I learn of a fantastic program by United Healthcare called The Cancer Resource Program. This program picks up any expenses not covered by the regular insurance such as co-pays. I immediately request Kathy be enrolled and an appointment for a phone interview with a nurse is made for November 29th.

Next, I call Memorial Sloan Kettering. Ismail, the guy I have talked to in the past is not available, but no worries. I speak to Matt about the Cancer Resource Program. He then tells me he is sending a request to Orange Regional Medical Center for all of Kathy’s medical records and reports. He goes on to say that once the biopsy has been done and the report complete, fax it to Ismail. I will also have to get the biopsy slides and bring them to our first visit at Sloan.


Tuesday, November 28, 2017 – We are 1 day away from the biopsy that should have happened last week, but was cancelled.

I call Memorial Sloan Kettering Cancer Hospital in another attempt at setting an appointment with them. With the daughters help, I had the names of two doctors at Sloan that we are hoping can head the medical team that will be formed in curing Kathy. Our plan is to set an appointment for Friday, Dec 1st, taking into consideration the biopsy would have been performed two days earlier and the results already complete. Once again I am told that no appointment can be made until after the results of the biopsy are in.

When calling them with my initial questions last week I was told the same thing. I’m not certain why I think it will be different this time. Perhaps it is because family has told me there is a way to get an appointment before the results are in; perhaps it is because I feel that they (the medical community) owe us for already having pushed the biopsy back a week; or perhaps it is as simple as me talking myself into believing that I might speak to someone new at Sloan who isn’t as knowledgeable on the admitting procedures of a new patient.

A DATE! That’s all we want!


Wednesday, November 29, 2017 – Kathy and I wake up to a warm embrace – there’s been a lot of hugs this past week. The day has arrived for the first step…finally!

Kathy is a self-proclaimed “Big Chicken” when it comes to needles, and knowing that there will be a long one inserted all the way into her lung today is causing a tremendous amount of stress. She’s a real trooper though and ready to get this step over and done with as soon as possible. You gotta love this woman!

At 8:30 AM, we arrive at Orange Regional Medical Center. We are both quiet – inner thoughts over-powering and tainting any happiness we might have felt at having this big day finally arrive. As we sit there waiting for the admission desk to call her name, Kathy’s phone texting activities increase once again. Danielle is unable to make it but staying in constant touch through her phone. Katie and Lou, who live much closer, show up with smiles – a welcome sight to us both.

Small talk is made, we register at the admission desk, and finally they call Kathy’s name. Me and Kathy enter the out-patient surgery ward together, as a team, Team Fist Bumpers. She is shown to room 39, a three-walled room with a bed and curtain that is pulled shut behind us to form the forth wall/door. Vitals are taken, then a 30 minute session of answering the nurses questions…and having the nurse answer ours’.

Two surgical nurses enter to prepare Kathy for transport to the operating room. We learn that the procedure will be done on a CAT scan where the Radiologist can guide the needle to the mass and  snip off small samples of it. Other than a mild sedative being administered in the OR,  Kathy will only be given a lidocaine injection to numb the site of the biopsy needle, she wouldn’t be put to sleep – fidgeting movements increase.

The nurses tell me it’s time for her to go and I must go back to the waiting room. I give her a kiss, tell her I love her, and am heart broken as I walk away from my love, unable to do anything to help her.

An hour later I am being escorted by one of the surgical nurses back to meet Kathy. I am happy to hear the nurse tell me that Kathy “really wants a cup of coffee”. So after we make her a cup we continue through the halls until I hear her joking with a nurse. I round the corner to see her in bed, smiling!

The procedure is absolutely painless she tells me…she didn’t even feel the lidocaine injection. A great confidence builder for all the doctors she is destined to meet in the near future! After she tells me this she goes on to explain how these two nurses proved to also be angels sent from heaven to do a job that not many can. As Kathy was instructed to turn on her side to begin the procedure, with eyes shut tight, she feels a hand hold her own. She peeks through her eyelids and sees one of the nurses. This nurse holds her hand for the entire procedure.

As a writer, I learned quickly that repeating the same phrases in a story are a surefire way to get my editor’s red ink pen into a scratching, circling, and zigging frenzy. Much like my English teacher use to do. I’ll just have to chance the criticism when it comes to telling you that the medical staff we have met thus far are angels in disguise, sent from heaven.

I explain to the nurse that Memorial Sloan Kettering wants me to bring the pathology slides from the biopsy with me on our first visit. She immediately calls the pathology department right there on the spot and repeats my request into the phone. The lady on the other end instructs me to call the lab this coming Monday or Tuesday for pickup details. I write down the contact’s name and number in my ever-growing notebook and promise to call. (This notebook has since been upgraded to a larger calendar/monthly/weekly planner. Invest in one and write down every appointment, summary of appointments, and I even started adding things needing to be done so I wont forget. The book is not going to be a waist of money, its actually worth its weight in gold).

The staff want Kathy to remain under observation for three hours. Katie and Lou come in and we all joke around while the time creeps by. When it is time to leave we all hug and go to our separate homes knowing that it will be a long weekend.

We are told the results will take 3 to 4 business days


Friday, December 1, 2017 – I take my lunch break at work and see an excited text from Kathy, “The results are in!!!! We need to be to Dr. Fruchter’s office at 4:30 PM!”

5:30 PM: Our appointment is delayed an hour but this is okay. We sit in the waiting room, holding hands. I try for corniness but its just not there at the moment. Danielle text us, requesting to be put on speaker phone while we hear the results. I am thankful. I already know there is a good chance that I will forget something said. It’s good to have family there to listen at such stressful times.

As the doctor escorts us to an examination room, I call Danielle and put her on speaker phone. The doctor faces us as we take our seat on the familiar examination table. He begins, “You have a cancer called Adenocarcinoma…”

adanocarcinoma_image

Cancer that forms in the mucus-secreting glands is referred to as adenocarcinoma, according to Cancer Treatment Centers of America. Up to 99 percent of all prostate cancers, 95 percent of colorectal cancers, most non-small cell lung cancers and certain pancreatic and esophageal cancers are classified as adenocarcinomas.

 

I think he is interrupted at this point by one of us. “Is it small cell cancer or non-small cell?”

He said, “It’s a non-small cell type.”

I think he is a little taken aback by our exhalations and smiles. Our Son-in-Law’s mother died of a small cell cancer and we were praying it wasn’t the same. Not much better, but certainly one with better odds of survival, and of even greater importance, a type that can be operated on.

To help him understand our feelings of utter relief, we go on to explain how we were already prepared for it to be cancerous. We saw it as a blessing that it wasn’t one of the worst types. Also, we go on to explain to him that we have an army of prayer warriors from around the globe standing beside us!! We are HUGE believers in the Power of Prayer!

Next, we tell him where we will be treated: Memorial Sloan Kettering Cancer Center. I share a recommendation from Memorial Sloan that Dr. Fruchter order a PET Scan because he can probably get it done quicker than Sloan. Dr. Fruchter turns to Jill, his amazing nurse. She leaves the room to work her magic on the phone. A few minutes later she returns to say an appointment has been made for Thursday morning, December 7th.

The PET Scan is the test that will determine if the cancer has spread. We still don’t know what stage this bastard is in but we are certainly moving in the right direction to find out.

It’s time to wait for new knowledge…big knowledge! This is even worse than having to wait for the biopsy results. Kathy is imagining that the cancer is continuing to spread throughout her body as we go through these steps – each step seeming to be measured in weeks!

Time to wait again…

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

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

So, let us begin the journey…

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

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

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

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

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

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


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

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

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

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

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

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

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


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

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

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


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

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

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

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

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

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

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

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


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

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

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

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

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