40 Years Ago Dr. Einhorn’s Discovery Segued to Saving Thousands of Men’s Lives.
Please join us in a celebration to Dr. Einhorn.
Voted as one of the Top 5 Advances in 50 Years of Modern Oncology Dr. Einhorn’s discovery of a cisplatin-based chemotherapy regimen for testicular cancer changed the ball game. The discovery revolutionized the disease from a 5% survival rate, for metastatic disease, to the overall 95% survival rate seen today.
We invite you to help us honor Dr. Einhorn’s 40th Anniversary and his contribution to the lives of those affected by the disease. We know that cancer is not a single person’s disease and we ask that the survivors and those around them say a few words about how Dr. Einhorn’s work has affected their lives.
Please leave a comment on this post or contact us privately and we will assemble your responses into a nice book to present to Dr. Einhorn. Including your name and location might be a great touch. This will not be a branded book coming from us but rather a collection of your stories coming from you. We’re just helping collecting your words, putting them into a book and delivering it to his office for a much deserved honor to Dr. Einhorn.
While I did not receive chemotherapy for my testicular cancer your work has afforded me the opportunity to meet hundreds of guys that have received it and that is because they survived. My diagnosis was an incredibly scary time but my resolve was knowing that the year I was born the survival rate for metastatic disease was 5% but the year I was diagnosed my overall chances of survival were at 95%. Thank you for your work in providing a “security blanket” to knowing I would survive. I am not sure what my life would have been like without cancer but I can tell you I love what it has been since my diagnosis. Thank you for giving me these years to experience it.
Thanks for Your Help in Honoring a Great Physician,
Once Again Stand Up 2 Cancer was an Awesome Event
I have been watching Stand Up 2 Cancer since the original event in 2008 and each year chills come to my skin and tears to my eyes. The event is amazing given the celebrities that participate and the fact that it is broadcast uninterrupted on all of the major networks. However, more amazing is the money they have raised and most importantly the impact and work they are supporting with those funds.
While watching this year four things came to mind that should generate questions and I wanted to address those questions.
What is the Role of Obesity in Cancer?
The opening scene started with Melissa McCarthy comedically running with a torch and a joke that she just completed 29 miles. Melissa handed off the torch to Steve Carell, who decided to take the escalator instead of running up the red carpet steps. Steve tossed the torch to Eric Stonestreet with Eric saying, “I don’t want to get sweaty.” I applaud all 3 celebrities for providing an entertaining opening but it got me thinking about exercise and the role of obesity in cancer.
According to the National Cancer Institute it was estimated that in 2007 obesity was the cause of cancer in 34,000 men and 50,500 women. This means 4% of male cancers and 7% of female cancers are being caused just because of obesity. Obesity is linked to increased risks of 8 cancers and most likely involved with more. I won’t get into the role of exercise on obesity or on cancer but I think the stats on obesity causing cancer are shocking and need to be addressed.
Why has Government Funding for Cancer Research Diminished?
At the beginning of the program, talking about the need and impact of Stand Up 2 Cancer, Robert Downey Jr. stated, “So much government funding for cancer research has diminished.” But, why? In September 2008, the Obama-Biden Plan to Combat Cancer promised to double funding for cancer research within 5 years, with focus on the National Institutes of Health (NIH) and the National Cancer Institute (NCI). However, the NIH reports that funding of cancer research since 2008 has decreased. So where did all of these promised funds go? I have no answer to this question but perhaps your politicians may know so why don’t you ask them.
How Common is Adolescent and Young Adult Cancers?
Stand Up 2 Cancer featured a lot of stories about cancer survivors and how cancer research contributed to their survival. Most of these patients were either pediatric patients or older adults. Where were the adolescents and young adult (AYA) cancer patients age 15-39? There are 6 times more AYA cancer cases, affecting 15-39 year olds, than pediatric cancer cases, affecting 0-14 year olds. I don’t think SU2C purposefully left out AYA patients. To be honest, perhaps there would even be justification to leave AYAs out. Cancer survival rates for AYAs have basically remained the same for decades. One of the reasons is thought to be a lack of participation and access to clinical trials that have been so valuable to pediatric and older adult cancer fighters. Raising awareness of AYAs and clinical trials is beyond the scope of SU2C but it does need to be brought more out into the open.
Will Crushing Cancer’s Testicle Kill it?
I applaud Ron Burgundy for making an appearance, entertaining us and declaring his distaste for cancer by announcing, “Lets grab one of cancer’s testicles and pop it like a plump water ballon on a hot summer day.” I just thought I would help educate Ron in that crushing testicles will not kill cancer or anyone for that matter. All of my testicular cancer survivor brothers are proof that one can live a long, healthy and active life without one, or two, testicles.
Once again, Stand Up 2 Cancer was amazing and I hope it was a huge success to raise funds for all of their programs to help cancer fighters live longer lives. The show had one purpose and that was to raise money and not to address other issues in the cancer continuum. The questions raised in my mind while watching the show were just from me reading between the lines.
Thanks for Reading,
I just learned that I helped find a potentially life saving MATCH for a bone marrow transplant.
I know, I’m not the match but it was the best that I could do.
When I heard the news today no one was here to see the goosebumps on my arms and the tears in my eyes but it got me thinking about how the whole story evolved so I thought I would share it.
On August 14th 2011, I participated in a Memorial Trek up Mt. Snowdon, in Wales, in honor of those young men that we have lost too early from testicular cancer. I was carrying a banner with the names of three young men that I wanted to especially honor, so I was excited and motivated by this. I was also happy knowing I was going to see many of my UK testicular cancer brothers and that the trip was part of my 5 year Cancerversary celebration.
During the trek we ran into another group of hikers that seemed to be rocking out the entire way up. Indeed, they were rocking out as Mike Peters from The Alarm/Big Country was among them and playing music as they ascended. I enjoyed the jams and later learned the group was part of Mike’s organization Love Hope Strength.
That evening at the hotel, I met several people from Love Hope Strength UK as I was eager to learn more about what they did. I learned that they were also located in the U.S. and that they got people registered on the bone marrow donor registry.
Joining the bone marrow donation list was something that I had wanted to do but never had. I felt that registering was part of my obligation of being a cancer survivor. After all, I was already an organ donor so why not donate bone marrow to save a fellow cancer fighter’s life. At least with bone marrow I could donate while I was still alive. I knew too that some testicular cancer fighters undergo bone marrow/stem cell transplants (luckily they can use their own bone marrow/stem cells) and I thought that perhaps I could encourage other testicular cancer survivors to register as well.
Upon returning to the U.S., I started to learn a bit more about Love Hope Strength and the bone marrow registry. I learned that their Executive Director at the time, Shannon Foley, even had a brother that had faced testicular cancer. Unfortunately, I also learned that as a cancer survivor I was not eligible to be a bone marrow donor.
Not being eligible to be a donor diminished my enthusiasm a bit. Then, in March of 2013, I was invited to participate in the Belfast Strut in Northern Ireland. This event launched the “Zero Campaign” in celebration of Northern Ireland achieving zero annual deaths from testicular cancer 3 times in 10 years. Amazingly, Shannon Foley and her fiancée Jeremy Henn were also in attendance and I got to spend several days getting to know them and Love Hope Strength better.
I retuned back home with a new mission. I realized that even if I couldn’t register myself, that I could help get others registered or even get them to register in my honor.
I decided to attend Vail Rocks, one of Love Hope Strength’s main events, in June 2013 so that I could learn even more. At Vail Rocks I got to see Mike Peters again and even sign his guitar that he was going to use on his U.S. tour. Imagine that, a cancer survivor signing a rock star’s guitar. If you didn’t already know, Mike Peters is also a cancer survivor so it is even more of an honor to get to sign a fellow cancer survivor’s guitar. I also got to meet Shannon and Jeremy’s families and many of the Love Hope Strength volunteers and supporters.
I volunteered for my first concert on July 26th 2014 at the Under The Sun Tour in Columbus, Ohio. I was basically the local lead and my dear friend Lisa, who was in treatments for a brain cancer recurrence at the time, was the first to volunteer to help. My friend Jason came to help as well. How amazing it was to be doing what we were doing. Here we were, two cancer survivors (one of which was back in the fight) attending a rock concert to help get people registered for the bone marrow donation registry and perhaps help save a fellow cancer fighters life.
I again took the lead and volunteered for a Flogging Molly concert in Cincinnati in March 2014.
While at 35,000 feet flying to the OMG! Cancer Summit for Young Adults in April I received a Facebook message from Jeremy Henn explaining that Katie Poppert, the Love Hope Strength’s National Medical Advisor was going to be in Las Vegas for the summit and may need some help so I volunteered for two O.A.R. shows while in Las Vegas.
I had a great time meeting Katie and she was going to be in Columbus, Ohio in May for Community for a Cure so I again volunteered.
To date, the events I have volunteered for have gotten around 175 people “On The List” to be potentially life saving bone marrow donors.
The amazing thing is that today, August 3, 2014, I learned that I have been a part of finding a potentially life saving match!! One of the people we registered at the Community for a Cure event is a match for a current patient in need for a bone marrow transplant.
Wow, what a trip it has been in the last 3 years. I have gone from knowing nothing to bumping into Mike Peters, to learning about Love Hope Strength, to meeting Shannon, Jeremy, Katie (and many other volunteers and supporters), to hiking up Vail mountain, to volunteering numerous times and FINDING A MATCH!!
Things have also changed along the way. Shannon has resigned as Executive Director and moved on to other ventures so congratulations to her. Unfortunately, my dear friend Lisa passed away but I know how proud she is knowing that I was part of helping find a match and that she was there at my first concert as a volunteer and my biggest supporter. Lisa was an amazing person. Can you imaging being in treatments, bald and attending a rock concert to help possibly save another cancer fighters life?
There is also one huge constant. Love Hope Strength is Saving Lives, One Concert at a Time.
Learn more about volunteering for Love Hope Strength and help save lives too.
Did Pinterest hire new marketing pun writers?
We are sure that this was just a total coincidence but when we saw the preview of the latest Pinterest email and read “On the Ball” we had to open it.
Perhaps a few more puns in our awareness campaigns would be more advantageous? Or, do you think if we give you workout tips that you will check your balls more.
Let us know what you think will work.
Ping Pong Club Partners With the Testicular Cancer Society to Spark Conversations
NEW YORK, NY–(Marketwired – June 12, 2014) – To raise awareness of preventable health problems and encourage early detection and treatment of disease among males, SPiN, the international ping pong venue co-owned by Academy Award-winning actress Susan Sarandon, announces the launch of Rally for Men’s Health, a month-long initiative spanning the month of June. For the first time, the company will turn their balls blue, engage high-profile personalities in matches, launch a social media campaign and offer specials to benefit the Testicular Cancer Society.
With obvious health benefits of physical activity and human connection, Men’s Health Month provided an opportunity for SPiN to demonstrate their platform as the “unplugged social network” which gets people moving, and their venue as a place to initiate conversations. “The Rally for Men’s Health was created in the true spirit of our organization,” says Pieter Vanermen, CEO of SPiN. “Using a little humor to tackle these very serious issues is another step in our mission to strengthen our communities.”
The venue’s first step is to turn their ping pong balls blue, with a donation pledged to the Testicular Cancer Society for every party who serves up the “Blue Ball Special” at their downtown locations in New York, Los Angeles, Toronto and Dubai. “One guy, every hour, every day is diagnosed with testicular cancer,” says Mike Craycraft, Founder of the Testicular Cancer Society, which provides education about the disease and support for fighters and survivors. “SPiN’s role in provoking conversation is exactly what we need to overcome that moment of awkwardness, potentially saving lives.”
The ping pong venue will also donate one dollar for every photo of a blue ball posted with the hashtag #SPiNBlueBalls on Instagram or Twitter.
The funds raised mark the SPiN Foundation’s first charitable gift. As the non-profit arm of the global ping pong company, the Foundation’s mission is to help their neighbors by focusing efforts on organizations that create opportunities and provide assistance to those in need. Proceeds will fund TCS’s “Chemo-Sabe Comfort Kits” for young men going through chemotherapy treatment.
SPiN is a franchise of international ping pong venues that combine an unusual mixture of sport, design and entertainment. Offering unique day and nighttime entertainment, the clubs feature ping pong courts, a full bar, restaurant, pro-shop and private VIP room. Memberships are available but are not necessary to take part in the nightly events, tournaments, private ping pong instruction with professional players, and casual socializing and play. Created by owners Franck Raharinosy, Andrew Gordon, Jonathan Bricklin and Academy Award-winning actress Susan Sarandon, SPiN venues are currently located in New York, Los Angeles, Toronto and Dubai.
About the Testicular Cancer Society:
The Testicular Cancer Society is a 501(c)(3) non-profit organization that raises awareness for the most common form of cancer in men age 15-35. It is dedicated to increasing awareness and education about the disease and providing support for fighters, survivors and caregivers. Founded by Mike Craycroft, a clinical pharmacist who waited seven months before seeing a doctor and being diagnosed with Testicular Cancer, the mission of the group is to get people to talking about the disease.
We just received notice of a research project that is looking for participants to evaluate testicular cancer online support groups. We wanted to pass it along and encourage you to participate if you use online support groups.
I am currently undertaking a research project as part of my Health Psychology MSc at The University of Nottingham. The overall purpose of the project is to investigate whether members of testicular and prostate cancer online support groups perceive there to be health and social benefits of membership and if so, what are those benefits.
This study is conducted all online and involves answering a short questionnaire. The questionnaire should take no longer than 5-10 minutes. Participation in this research is completely voluntary and anonymous; you can also withdraw your data at any time. If you have any questions regarding this research please feel free to contact me on email@example.com.
The survey can be accessed at: https://www.survey.bris.ac.uk/nottingham/handsquestionnaire/
You have health insurance. Great. Where can you go for cancer care?
Thanks to the Affordable Care Act (ACA or Obama Care), we no longer have to worry about being denied health insurance because of preexisting conditions or that we will lose our coverage because the total cost of our care has reached spending limits. So, we now have health insurance plans that we can “afford” and as long as we pay the premiums we can keep them. Wonderful.
But, do know where you can go to get health care?
While we now have health insurance where we can go for health care is a totally different story. A story surfaced again this week that points out that care at renowned cancer centers may not be covered by your insurance plan. This report, by the Associated Press, reveals that only 4 of 19 nationally recognized cancer centers are covered by all of the insurance plans in their state.
The 19 hospitals surveyed are all part of the National Comprehensive Cancer Network (NCCN), an alliance of 25 of the top cancer centers in the world. The NCCN creates numerous guidelines that help physicians around the world care for oncology patients but evidently they may not be good enough for your insurance company.
How can this be? Well, we can select a health insurance plan that we can “afford” but the hospitals that are in the plan may not the top hospitals in the country but rather the ones located next to Chico’s Bail Bonds. I say, enough of the Bad News Doctors that we are directed to by the drunken pool cleaning insurance companies.
The cancer care health insurance solution
The ACA (Obama Care) should mandate, at a minimum, that any insurance policy written in the U.S. has to cover care at any of the 68 National Cancer Institute (NCI) NCI-Designated Cancer Centers.
The National Cancer Institute (NCI) is part of the National Institutes of Health (NIH), which is one of 11 agencies that compose the Department of Health and Human Services (HHS). Since the HHS runs Obama Care then this solution should be easy to remedy. If Obama Care mandates other coverages (such as, pregnancy, birth control and mental health coverage) then why couldn’t a quick change of the rules by President Obama change coverage mandates for cancer patients?
Why is access to top cancer centers important?
Testicular cancer is a perfect example of why access is so important. There are more urologists and medical oncologists in the U.S. than there are cases of testis cancer each year. This means, statistically, that not every urologist or oncologist would even get to treat a new testis cancer patient every year. Think of skills or things that you only use once a year. Do you consider yourself an expert at these tasks? Well, perhaps neither are the doctors that only see one new testicular cancer patient.
There are doctors that are experts in testis cancer. They have dedicated a large portion of their career to advancing the treatment of this disease and see numerous patients a year. However, these doctors are not next door at the “I Try Hard Hospital” but rather at larger centers of excellence. Their volume of patients seen helps increase the quality of their outcomes. Higher volumes and better outcomes is not something new and has been shown to correlate in other disease states such as cardiac surgery.
These larger centers are also where the cutting edge clinical trials are being conducted and by denying coverage at these centers the insurance companies could be denying access to needed clinical trial participants. There is an Obama Care clause that mandates that insurance companies have to cover the routine costs of clinical trials but discussion of this is beyond the scope of this piece.
The point is that access to care to these incredible facilities and doctors should not be denied or even hindered by plans confined behind state lines. A change of the law to cover all NCI-designated cancer centers would be a start. Ideally, means of determining centers of excellence for individual disease states should be developed and coverage at these centers should also be mandated down the road.
If my cancer returns, I would certainly want to drive the two hours from Cincinnati, to be seen at Indiana University. If I am willing to travel there on my own dime then why shouldn’t my insurance company cover that care? After all, incredible outcomes occur under the care of these doctors.
Care at Top Medical Centers is More Expensive
Maybe my care at Indiana University would more expensive than care at the “We Try Hard” hospital down the street. I don’t even know where to start to compare the charges as most of the financial data I’ve seen in health care is derived from Medicare data that mainly applies to patients 65 and older. I have yet to find data for younger testis cancer patients, data that should easily be obtained from the insurance companies themselves if they had a national database or willingness to release and share the information.
Perhaps the care I received would be cheaper if there were less adverse outcomes associated with care at Indiana University. Some data suggests that outcomes are better and adverse effects are lower when retroperitoneal lymph node dissection (RPLND) surgeries are conducted by higher volume surgeons. Indiana Is certainly a high volume center.
For the sake of argument, let’s assume that the cost of care at Indiana University is a bit higher than that of a local facility. So, my insurance company loses if I go to Indiana right? No, they don’t!
The proof dates back to September of 1974 when a dying, 23-year-old young man named John Cleland walked into Indiana University and ended up receiving the first cisplatin-based chemotherapy regimen for testis cancer. John didn’t die like the other 90-95% of the guys in his condition in the early 1970s. In fact, he was the pioneer patient for the cisplatin-based chemotherapy regimens that have saved easily over 100,000 young men’s lives. By walking through the door at Indiana University John has lived decades longer and guess what? I’m sure he paid health insurance premiums all of those years; as have his three children that he had after treatments.
A reasonable additional cost of care is certainly worth the benefits so we shouldn’t be denying care based on the cost. Ideally, we should base our care on physician excellence and excellent outcomes but even that system has it’s faults as doctors and hospitals might be more encouraged to deny treatments to the sickest of patients and refer them somewhere else instead. For example, after public quality data reporting for cardiac surgery was instituted in New York there appeared to be an increase in the severity of sick patients being referred to Cleveland Clinic for heart surgery. The thought is that facilities could keep their quality scores looking good if they referred their sickest patients to other states that did not have the quality reporting in place.
There is plenty of room to debate for the perfect system and scenarios but here is one thing that needs to be done now: The ACA (Obama Care) should mandate, at a minimum, that any insurance policy written in the U.S. has to cover care at any of the 68 National Cancer Institute (NCI) NCI-Designated Cancer Centers.
As cancer, or any other life-threatening disease, patients we do not have time for political debates and insurance appeals. If a federal entity, such as the NCI, designates caner centers then, at a minimum, those centers should be good enough for any insurance company to cover our care in those facilities. We can always improve from there and let’s hope there are many more John Clelands.
Thanks for Reading,
Is Pancreatic Cancer Action’s new Envy campaign going to far?
Is calling out other cancers appropriate?
A response from Testicular Cancer Society founder Mike Craycraft
A new video for the Pancreatic Cancer Action’s Envy campaign was just released. The 85 second video features two pancreatic cancer patients in which the male patient states, “I wish I had testicular cancer” and the female patient states, “I wish I had breast cancer.”
Controversy surrounding the Envy ad is starting to mount but is it really offensive?
Pancreatic Cancer Action has attempted to make a hard-hitting campaign to raise awareness to the dismal, unchanging survival rates and the underfunding for pancreatic cancer. In doing so, they decided to feature two pancreatic cancer patients wishing they had testicular cancer or breast cancer.
These patient’s wishes appear as if they are an attack on testicular cancer and breast cancer and I certainly feel that comparing cancers as if we are kids comparing scars on a playground is not the correct approach for cancer advocacy overall. I also do not believe that it would be appropriate for the Testicular Cancer Society to create a motivational video for testicular cancer fighters that has the tagline, “Be glad you don’t have pancreatic cancer.”
I founded the Testicular Cancer Society not to promote testicular cancer over any other cancers but rather to curate existing resources and fill the gaps in support that were not available specifically for testicular cancer. With testicular cancer being primarily a young man’s disease, although it can occur at any age, we also advocate for changes in the adolescent and young adult cancer continuum but not at the expense of pediatric or older adult oncology.
Pancreatic Cancer Action has issued a statement and made comments that they are not attempting to start a battle with other cancers and I do believe them. Do I feel that a pancreatic cancer patient wishing he had testicular cancer is a slap in the face to guys and their loved ones that have faced testicular cancer? Perhaps a little.
No matter what the survival rate, treatment regimen or cancer type, there is one thing that all cancer patients face and that is the sudden raw emotions and fears that crash down when a doctor tells you for the first time, “You have cancer.” The experience of facing our own mortality is another thing that we share and that serves as a bond across the spectrum of cancer.
However, the Envy ad is not saying that testicular cancer is easy and that patients do not face emotional and physical challenges with their diagnosis. It is not telling lies or spreading smears about the disease. What it is bringing attention to is that testicular cancer has a much higher survival rate. Even with a high survival rate there are guys and their families that are not on the fortunate side of those statistics and for families that have lost a loved one to testicular cancer then I do see this as kind of a slap in the face.
Could Pancreatic Cancer Action have gotten their point across without mentioning. “I wish I had testicular cancer?” Absolutely. Their video was spot on in their messaging and the controversial statements added little to the emotion of addressing their low survival rates. However, the statements are going to fuel their message in spreading as some good old controversy will certainly add to the spreading of any message.
I can’t fault Pancreatic Cancer Action on their campaign although I do hope that they sympathetically address and apologize to anyone that they may have offended. I do believe they could have avoided any offense by trying a different tactic besides controversy to spread their message.
Maybe I am wrong, maybe controversy is a good approach. Testicular cancer affects white males at a much higher rate than black males yet the mortality rate for black males is approximately 1.6 times higher than that for white males. You tell me, should we create an ad featuring a black male saying, “I wish I was white” or a white male saying, “I wish I was black” in order to get our statistical points across? I believe in doing so might not be wrong but somewhat inappropriate to infer that the grass is greener on the other side, especially since we really can’t put ourselves in the shoes of those we are pointing out.
On a personal note, I can empathize with the pancreatic cancer patients in the ad and with Ali Stunt. I never wanted or asked to be diagnosed with cancer. While I do believe there are many positives that can be gained after a diagnosis, such as enlightenment, I wish there were better ways to receive these positives than to have them so closely tied to a cancer diagnosis. I am not friends with cancer nor do I wish cancer upon anyone.
However, when I was diagnosed I was kind of glad it was me. Not to sound like a martyr, but as a health care professional I knew that statistically someone had to get it. I was single, with no kids and figured that it was easier for me to face things than it would be for someone with a wife and kids to worry about as well. I have also stated numerous times that if I had to pick a cancer to be diagnosed with that I would pick testicular cancer, because of how treatable it is, so maybe my personal emotions lead to my impression of the ad.
I do look forward to the day that there are no cancers or even to the day that cancers are considered a chronic disease because they are no longer killers.
Thanks for Reading,
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
House of Coq is a new Cause Partner.
House of Coq™ is a Chicago-based men’s lifestyle apparel brand who’s mission is to bring awareness to cancers that exclusively impact men. Their smart and original designs on premium apparel help unify all men.
In following their mission they have committed to donate 10% of their sales to front-line organizations in the fight against prostate and testicular cancer.
House of Coq™ has designated the Testicular Cancer Society as their primary beneficiary and has committed to donate at least 6% of their sales to the Testicular Cancer Society.
Their witty, classic and original creations are updated quarterly and provide ever-changing and updated apparel for a cause.
Just in case you are wondering, Coq is French for rooster.
Thanks for Your Support,