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:
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:
- For lodging there is Joe’s House, 877-563-7468.
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.
- For Lodging there is Health Care Hospitality Network, 800-542-9730.
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.
- Additional Funds possibly available through Patient Advocate Foundation, 855-824-7941.
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.
- For Caregivers, My Cancer Circle.
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: firstname.lastname@example.org. 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!