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.