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)
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