Archive for the ‘Caregiver Spotlights’ Category
August 12, 1993. This was the date that changed my life forever. In hindsight – for the better. I was 19 years old; one year removed from high school; and starting to live out a childhood dream of being a firefighter. Four days prior, I had played in an all day softball and volleyball game with the neighboring department, so I knew I’d be sore and a bit dehydrated. What I didn’t expect was urinating blood the next day, while at work! The ER pumped me full of NaCl (Normal saline IV) and referred me to a urologist. The appointment was set for 8/12/93. After peeing in a cup, having x-rays, and my “boys fondled” – for what seemed to be an eternity – the Dr. walked into the exam room and told me “Everything is normal with your kidneys…but have you ever noticed that knot on the side of your left testicle?”. (22 years later and I can recall the exact phrasing; even the monotone sound in his voice) Being 19 and embarrassed at the question – or to admit that I HAD in fact noticed – I did what any 19y/o would do…I lied. He told me it might be “nothing more than a cyst” but he would like to schedule me for a Contrast IV and Ultrasound the following week “just to check it out”. The following Friday, 8/20, I had the tests (including a surprise blood draw) and didn’t think much about it for the next 7 days. No one seemed concerned – not the doc; not the nurses. If they weren’t showing concern, then why should I? (Isn’t 19 year old logic great?!)
That all changed on 8/26.
August 26, 1993 was a Thursday. It was overcast, hot, and just enough rain to make it miserable to be outside. I arrived for my 1pm appointment – expecting nothing more than to be told “You’re fine” – to be lead, not into an exam room, but into the doctor’s private office! Thinking that this seemed “odd”, I still wasn’t concerned. The doctor walked in, sat at his desk, and said, “The mass on your testicle is a tumor. You have testicular cancer. The tumor is the size of a walnut…” For the next few minutes I remember watching his lips moving, but didn’t hear a single word that was spoken. I knew what cancer was. Cancer occurred in the brain, mouth, lungs, breasts, etc. Cancer doesn’t…no, CAN’T happen in your balls! My mother and paternal grandmother had breast cancer just 5 years prior, but cancer of the balls is impossible! This is what was running through my mind while watching his lips form words. Once his voice came back into tune, I heard these words: “This is very curable – if we start right away”. He gave me 3 treatment options and told me it was my choice as to which I could choose.
Option 1: Remove the testicle. Once pathology was done, a course of treatment – if any was needed – would be mapped out. He also was quick to inform me that if I was self-confident, a prosthetic testicle could be inserted later. (Now my shattered world was complete. I just got the worst news I had ever received in my short life, and this guy is talking to me about FAKE NUTS! Did he not remember mentioning the word “CANCER” to me just 2 minutes ago?!?)
Option 2: Needle biopsy. After pathology, a treatment course would be mapped out. (I quickly eliminated this option, in my mind. You know how sensitive our “boys” are… You know what a biopsy needle looks like… The later coming within 20 yards of the former can cause a man to commit murder! You all just crossed you legs and grimaced in sympathy.)
Option 3: Do nothing. He then regaled me with the story of a patient that chose this option. The patient was diagnosed at 22…died at 23!
I was 3-1/2 weeks from my 20th birthday…9/23.
Seeing as I had become very attached to living by this point in my life, another option was eliminated and my mind was made up…”Good-bye left nut!”. He told me to go home and talk it over with my parents, but I had already decided. I still took him up on the offer to process everything and told him I’d call the next day with my decision.
I left the office and stopped at the McDonald’s next door and used the pay phone to call my mom, and break the news to her. (Cell phones were around, but not as prolific as today, and cost a couple hundred dollars per month to own – nearly $1 per minute, per call!) Mom took like a mother should – hard. My next stop was work. They took it slightly better than mom; but, it was here that I unconsciously made the decision on how I would handle my illness. After being barraged with tears, hugs, and other sympathies, delivered with the same solemn tone that is normally reserved for funerals, I quipped, “It’s just cancer. What’s the worst it can do…kill me?”. Yes, humor. As morbid as I sounded, I needed to make a joke. My parents were beyond upset. My friends and co-workers were sullen. Someone had to be upbeat for me; and if they couldn’t do it, I had to! A girl I dated in high school played along and gave me this: “You know, cancer sucks! But, you gain a pick-up line…Want to see my scar?”!
Surgery was scheduled for 9/6 at 7am. I was told to rest for the next week, while my incision healed. Some of my friends stayed with me during the day, while my parents were at work. This is where I had a “setback”, of sorts. 2 days, post-op, I asked my friend that was with me if he would go down to the video store and rent a couple movies. He agreed – since it was a block from the house – and was given strict instructions: No Comedies! 15 minutes later he returned with a couple tapes (remember, it was 19930, telling me he got “drama and horror flicks”. The first tape starts to play and it’s my favorite movie…’Blazing Saddles’! As a captive audience, I could not avoid the comedy styling of Mel Brooks…and neither could the fresh, 5-6 inch incision that graced the lower left abdominal/groin region! The “side-splitting” comedy di just that, as I laughed so hard I tore the sutures! Back to the hospital for a fresh set of cat gut! By the way, that guy is still my best friend.
During my follow-up, I was told that the cancer had not spread, but – out an abundance of caution, due to my strong family history – I was going to have 1 round of radiation to my inguinal lymph nodes. The first therapy coincided with the first day of my Firefighter certification training class. I would go to recruit training during the day, and get treatments in the late afternoon/early evening…for 12 weeks. Around week 3, my instructors became concerned with how “sick” is was looking (and just physically sick) and tried taking me to the urgent care. I finally “spilled the beans” and let them know what was going on. To say they were pissed-off would be an understatement! They were, however, overly impressed with my stubbornness and promised not to treat me any different; but, they did keep an extra close eye on me, and when they saw that I was physically “worn down” they would let up on the whole class, just not me. I appreciated that they never let on to the rest of the class on how sick I was. It wasn’t until about 10 years later that I broke it to my “Fire Buddy” (the partner that I had for the 3 months of training) as to what was up! She said that took balls…to which I corrected her, “No…that’s B-A-L-L. Singular, not plural!”
The last 22 years has been non-eventful. Although there has been 2 scares (1 small cyst on the right testicle; and 1 really bad hernia that mimicked the original pain symptoms), I’ve had no recurrences. Thanks to the radiation, I’m sterile, so no kids. But, given the choice between reproductive sterility or a potential re-occurrence, sterility isn’t a bad trade off! (The world is better off without a “Mini-Me”, according to my close friends) I never got the prosthetic testicle – I feared that ladies would be staring at my crotch and saying, “I bet they’re fake”. Frankly, you can’t even tell unless you physically grab my scrotum. For the first 4 or 5 years, I used to “omit” the orchiectomy from my medical history, on annual employment physicals -and watch the reaction of the P.A. or Nurse Practitioner when they would perform the hernia check! I can still get a reaction from those who medical professionals who don’t take the time to read my medical history, even though I’m open about it.
For those who are reading this, and are going through this yourself, or are supporting someone who is battling it, this is my advice: First, Don’t Stop! Whatever you were doing the day before your diagnosis, do that the day after! You are battling it…it is not battling you. It has moved into your house, sleeping on your couch, eating your food, and using all the toilet paper and leaving the empty tube on the holder! By stopping your life, you are condoning it’s actions and giving it permission to stay forever. Your house. Your rules.
Second, Humor. As I stated, everyone that you share your diagnosis with is going to “boo-hoo” you. This depression thick air is worse than the cancer itself. It’s a natural human reaction. We all do it. Let peole “grieve” for you, but let them know, also, that after this initial reaction, there will be “no more” and that you only want those around you that can be strong for you! Also, do something I never did: take a moment and grieve for yourself – albeit, a brief one. I did not, nor have I ever, taken a moment to completely process what was happening to me. I immediately went into “survival mode” and started finding ways to distract myself. Cry. Say, “Why me?”. Then get back to your life. In 2008, I discovered the book “Cancer on Five Dollars a Day* (*chemo not included): How Humor Got Me Through the Toughest Journey of My Life” by Robert Schimmel. It chronicles the late comedian’s battle with cancer and is a great blueprint for anybody battling it.
Third, Confront it. For years, I never mentioned that I had cancer. I was embarrassed that I had a cancer that was so common, I had never heard of it at the time of my diagnosis. Then Lance started riding his bike through France and suddenly, testicular cancer had a face…had a name. Still didn’t have the respect of other cancers, but it was being talked about. I attribute this to being a strictly “guy” disease…and guys don’t talk about this stuff. Then I had an epiphany: My diagnosis pre-dates that I Lance and John Kruk (Former MLB Player and current ESPN Baseball Analyst, who was diagnosed in 1994). I made getting your balls cut-off trendy! Today, I mention it whenever someone says, “Tell me about yourself”. Remember that pick-up line I was given? It has actually worked on a couple women; although, when I mention it to males, I usually get, “Do it and I’ll take the other one off!”. Such violence for offering medical advice that could, potentially, save their life.
Lastly, Never use the term “Survivor” when referring to your successful battle with cancer. I use “Conqueror”! Survivor, to me, gives the impression that it won, on some level. It didn’t win. I WON! It tried to play in my sandbox, with my toys, and I shot it; stabbed it; hanged it; draw and quartered it; placed it’s head on a stick at the city limits; ate it’s lunch; then – for good measure – peed on it! Survivors don’t do those things…Vikings and Attila the Hun did such things. You know…Conquerors!
I Would Never Want to Be Anywhere Else On Earth
Caretaking Through Testicular Cancer: A Mother’s Story
At 19, my son’s stomachache led to a CT on his abdomen, which led to his Stage IIIB testicular cancer diagnosis. Ian hoped his story would help others. I share these pieces of Ian’s story with the same hope.
Cancer Diagnosis / The Worst Phone Call Ever
The doctor called with the CT report. As he elaborated the details, I fell to my knees. I suddenly couldn’t breath. I felt as if the news had sucked the life out of me. As the doctor continued I clutched the arm of a chair and tried to stand but I had become too weak with shock. I could not believe what he was saying.
As I sobbed and gasped for breath, I crawled along the floor with the phone in one hand, interupting the doctor, “No! No! Not Ian! No! There’s a mistake! Not my son! No! No! It can’t be true!”
But it was true, and our lives changed in that very moment.
Cancer Treatment / Change in Personality
Ian had loved being in the center of the action. He made any event seem like a party with his funny antics and outgoing nature. Once Ian started cancer treatment he often was not in the mood for conversation. He usually didn’t want sound around him at all. He was miserable with nausea nearly every day for three months, which made it difficult for him to tolerate noise, light, and motion. He tried to cope by asking us to silence our cell phones, keep his room dark, and move about slowly and quietly in our house or his hospital room.
Cancer Care / Difficulty Sleeping
Ian felt grateful for doctors, nurses, and aides who worked quietly in his hospital room. He never slept well. He appreciated low voices and minimal noise from doors closing and general clatter because it all woke him from his light sleep. He told me that sound and light seemed more intense than normal.
Cancer Treatment / Paranoia
The pain medications caused Ian to feel paranoid, so he wanted me always near him. He sometimes woke startled from a light sleep, grasping my hand and looking at me as he tried to figure out where he was and if everything was okay.
Cancer Care / Cancer Treatment / Write it Down
I kept a treatment journal for Ian every day– details from conversations with every doctor and nurse, medical procedures and medications’ purpose and side effects. This helped us keep track of answered questions, review and track progress, and reference our notes and questions during appointments with Ian’s doctors. Ian tried to keep a journal but he only wrote two entries.
Cancer Care / Stay Prepared
We kept an extra pillow and blanket in the car for driving to his appointments, and a plastic bag in case he needed to throw up. I always carried items for Ian in my purse— bottled water, earplugs, his music and headphones, hard candy, dried fruit, chewing gum, and occasionally a package of Pop Tarts, one of the few foods he could eat without throwing up. We kept his duffle bag ready with clean clothes. There were several times we were instructed to take him to the Emergency Room where he would sometimes be admitted to the hospital. We never knew what would happen, so we tried to prepare for anything.
Cancer Caregiver / Be Organized
At home, Ian’s 12 medications were in his bedroom with doctor’s instructions next to them, and a thermometer, hand sanitizer, and doctor’s emergency numbers. I logged Ian’s temperature from 2-4 times each day and rated his symptoms and side effects as they did in the hospital. Persistent chest pain, headache, signs of internal bleeding, or slight fever meant a trip to the ER.
Cancer Care / Keep Comfort Items Nearby
Cotton swabs— irritation from brain radiation treatments made Ian’s ears itch.
Trash basket near the bed— Ian sometimes could not make it to the bathroom to throw up.
Dried fruit snacks, Lifesavers candy, chewing gum to help fend off nausea or bad taste in mouth.
Extra pillows and blankets for Ian. I also kept a pallet of blankets for me to sleep near Ian.
Favorite personal pillow and blanket for hospital stays. Ian said it felt better to have something from home with him.
Warm or cool washcloth to place over eyes or forehead— soothing for stress, anxiety, nausea, headache.
Quality Aloe Vera gel to soothe dry skin from radiation.
Ice pack to soothe headache and radiation burn.
Gentle peroxide mouth rinse for mouth sores caused by chemotherapy.
Soft toothbrush for sensitive gums.
Box of Tissues— Ian sometimes had nosebleeds caused by chemotherapy.
A pillow under each knee— to ease pressure on lower back. Ian’s lower back and hips were painful from the neupogen injections and the large tumor in his stomach that pressed on his back.
Heated blankets and an extra pillow during treatment at the cancer center helped Ian relax.
Loose-fitting clothes and house slippers for hospital stays.
Stretch arms and legs each day, using isometrics when possible. Sometimes Ian was too weak to get out of bed, so my husband, Mark would lift and stretch Ian’s arms and legs for him, and sit him up to stretch his back. Ian said it felt good.
What to Say to a Cancer Patient / Cancer Patients are People, Too
Ian appreciated the way his nurses spoke to him as a friend instead of a patient. If he had questions about his health or treatment, they answered him. But if he didn’t ask, they talked to him about his life, his interests, not his cancer. Ian appreciated that more than any of them may know. He also appreciated a nurse who was skilled with a needle —whether starting IV’s, accessing his port catheter, drawing blood, or giving injections. Ian’s doctors also took time to listen to Ian’s concerns and get to know him as a person. Good oncology doctors and nurses do make a difference in their patient’s lives, even if their patients don’t live to tell them.
It bothered Ian when friends and family questioned him about his cancer or what chemo and radiation felt like. Ian lamented, “There is no way they could ever understand this unless they have to go through it. There’s no way I can explain it to them. I wish they would stop asking me.”
Cancer Palliative Care
When Ian was admitted to the hospital for the last time, he was so very sick. He needed help moving around, walking to the bathroom, or turning over in his bed. He couldn’t eat. I held his mug to help him drink water. When he couldn’t have water, I placed a sponge swab in his hand, wrapped his fingers around it, helped him dip the swab into ice water, and guided his hand to his mouth to quench his thirst. I held the waste basket for him as he vomited or coughed up blood. I pulled the blanket over him when he was too weak to do it for himself.
In the days when testicular cancer was taking him from us, I washed his face, hands, legs and feet with a warm washcloth every day. I often swabbed his mouth with a cool damp sponge swab, and smoothed lip balm on his lips so his skin wouldn’t become dry and cracked. I held his hand, and I kissed the tears that leaked from his eyes as he lay too sedated to respond.
Cancer Caregiver / Be Quietly Present
Of all the ways we tried to help Ian fight his cancer battle, one thing made an impression on me more than anything else— how Ian valued my being quietly present with him when he felt his worst. Ian taught me that it isn’t necessary to say anything at all. The best thing to do is be present and listen, be patient, and be comfortable in the silence. It wasn’t normal for him to want his mom constantly by his side, but he thanked me almost every day for it.
Ian would say to me, “Mom, I don’t know how you do it, but thank you so much for being here with me. I could never get through this without you.”
And my reply was often the same, “I would never want to be anywhere else on earth, Ian. I love you more than everything.” I always will.
Karen A. McWhirt
Welcome Home Dad – Francis O’Connell
Frankie O’Connell Jr. passed away in April 2004 after a ten month battle with testicular cancer. With his passing he left behind 3 children, Jaclyn, Frankie III and Ryan. Nine years later, as a freshman in college, Frankie III, composed a charcoal drawing that really shows a glimpse into how testicular cancer and the loss of his dad has affected his life.
In Frankie III’s words:
Welcome Home Dad – Francis O’Connell
This piece was a charcoal drawing done for my Drawing II. The prompt was a transgender self portrait, but I pushed that to be more of a metaphorical sense. The hammer and beer bottle symbolize the things I never got to do with my dad for the first time, build or fix things, learn how to construct, and have my first beer with my dad. My dad passed of testicular cancer when I was nine and that what the misshapen and deformed genital area represents. So to fit the transgender guidelines, I feel that I missed out on learning these things that society says makes you a man. This piece is 6 feet tall by about 2 and a half feet.