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)
Me 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.
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:
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.