December 15, 2012
I don’t remember when I’d first heard of support groups, but I do remember the first time someone suggested I join one.
It was spring of 2005 and my orthopedic oncologist, Dr. Cindy Kelly had just told me my left leg would need to be amputated because bone cancer had returned to my leg near the ankle. The tumors were so big that cutting them out would not leave enough bone intact for an artificial joint to work. I needed to lose my leg in order to save my life.
While discussing the technicalities of cutting my leg off, healing and getting fitted for a prosthetic, Dr. Kelly suggested the idea of joining a support group.
“This is going to be hard on you, Mike”, she said. “You’re going to feel a sense of loss, like someone died. Please consider it.”
I replied that I would, but promptly pushed the idea to the back burner. I had handled the emotional baggage of all my other operations. What made this one any different? I was conveniently forgetting the year I’d spent in counseling in my mid-twenties coming to terms with growing up disabled and the years of feeling like I’d been cast aside by everyone.
The idea of a support group came back to me about a year after my conversation with Dr. Kelly; about the same time the cancer came back as well. I was grappling with the news of cancer’s return and the idea of more surgery, unsure of what to do next and wondering what I should feeling about the process besides anger and betrayal.
David Bernard, a co-worker at the radio station where I worked, walked into my office and said, “I’m sorry to hear that your cancer is back. But I’ll bet you don’t know that several of us here know exactly how you feel, because we’re all fighting cancer too.”
“You’re right”, I answered. “I didn’t know that.”
“We call ourselves the Chemo-Sabes”, David said. “We’re getting together for lunch next week and we’d like you to join us. The group consists of me, Susan, Teri, a couple of others and now you. It’s nothing formal. We just have lunch together and share where we’re at with treatments and what our doctors are saying. What do you think?”
I considered it for a minute and thought ‘why not?’. It seemed like the worst that could happen is I would get to know some of my co-workers better. And everyone of the Chemo-Sabes were people I liked.
“Okay”, I told David. “I’ll do it. I’ll join you guys for lunch.”
“Great”, David answered. “You can ride with me. We’ll leave at 11:30am.”
Over the next couple of days, I actually found myself counting down the days until our lunch. I was looking forward to it and more excited than I would have thought. The day arrived and we headed out for lunch. I was a little nervous and not sure what to expect.
We got to the restaurant ahead of everyone else and found our table. The rest of the group arrived and before I could say anything, Teri MacLennan wrapped her arms around me in a warm hug, welcoming me to the group. We all sat down, ordered lunch and began to talk.
Soon it was my turn and I nervously looked around the table. I took a deep breath and began talking about my cancer journey. Before I knew it, nearly 45 minutes had gone by, our lunch plates were mostly empty, there were smiles, a few tears, lots of reassuring looks, and many words of encouragement directed my way.
More than anything, I felt like I had set down a 200 pound backpack. My heart was lighter than it had been in years. They understood. My friends around the table understood better than anyone what I had felt, what I had feared and what I had faced. And in that moment, I learned why support groups can be a cancer patient’s best weapon, and best friend, in our journey with cancer.
Very often, one of the hardest things about cancer isn’t learning that we have it; it’s telling others that we have it. Naturally we try and soften the news rather than hurt family and friends. And we push our own feelings aside for the moment. While the intent here is noble, we end up shortchanging ourselves because we never get to talk about our feelings in an open, candid manner.
Having that discussion, especially with our fellow patients, is actually an essential part of our cancer journey. By sharing our hopes, our fears and everything in between, we’re calmer and less stressed about our cancer. Releasing that stress in a positive manner lets our body use its energy elsewhere. The result is we’re helping ourselves become stronger and better prepared to move forward in our cancer battle.
This isn’t just rhetoric. The idea of mental and physical health being interdependent is widely accepted in the medical community There is a ton of research showing that cancer patients with a positive mental attitude respond better to treatment and live longer; regardless of the type of cancer they’re dealing with.
So how do you find a support group? Asking your health care provider is a good place to start. Providers are trained to treat the whole person these days. That’s not just a cliche’, but the way care is administered now. It’s why the form we fill out for every return visit asks how we’re feeling emotionally.
Let your health care team know you’re interested in finding a support group. MD Anderson has its own in-house network of support groups and other services to help you deal with the range of emotions we all face as cancer patients. They can provide you with a list of the specific services available. You can also click on the Getting Support link under Patient and Cancer Information on MD Anderson’s website.
To be completely honest, when my doctor first mentioned a support group, I was too full of pride and too embarrassed to consider the idea. When the cancer came back, my fear and need for help pushed pride and embarrassment right out the window. After that first lunch with my friends, my only regret was not sharing my cancer journey sooner.
You’ve chosen to give yourself the best chance for beating cancer by coming to MD Anderson. Don’t shortchange yourself by missing a part of your treatment that can help you more than you might realize. Find a support group to share your journey with. Next to coming to MD Anderson, it’s one of the best things you can do for yourself, and your loved ones, to make treatment easier. Once you’ve done it, you may find, like I did, that your only regret is you didn’t do it sooner.
September 6, 2012
Like most MD Anderson patients, many of my visits include a variety of scans such as CT and MRI. Since I need two MRIs, my schedule consists of a CT and MRI on one day, followed by the second MRI the next day. Even though it can be done safely, insurance restrictions and MD Anderson policy will not allow more than one MRI per day
In order to minimize the amount of time I have to spend in Houston, Patient Scheduling sets up my appointments as close together as possible. As a result, my first day of appointments is chock-full, often concluding with the CT, followed by the first MRI.
With all of the appointments stuffed into the first day, I find myself at MD Anderson for eight to twelve hours. Even with everything on the schedule, I end up with a lot of time on my hands. First off, there is the time between appointments themselves. Things like bloodwork and x-rays don’t usually take much time, but for procedures like CTs or MRIs that require a lot of preparation, it’s a different story.
And if one appointment takes longer than the scheduled time, something breaks down, or one of the imaging centers is simply short-handed, things start backing up and everyone’s appointment gets delayed. At that point, a day that is already filled with nervousness and uneasy feelings because of why we’re at MD Anderson goes from uneasy to unbearable.
Instead of being calm and easygoing, we become impatient, short-tempered and aggravated. Soon we find ourselves snapping at nurses, technicians and other caregivers. Being human themselves, it isn’t long before our providers respond in kind. And there goes everybody’s day, not mention everyone’s good mood.
In an angry moment, you might be tempted to say, “So what?! I’m the one with cancer! Why should I have to be nice to anybody?” But you know it doesn’t help; not really.
And while the person at the MRI control console probably doesn’t have cancer, they are trained to provide your doctor with the images needed to help make an accurate, effective diagnosis. So it really is in your own best interest to have the exam go correctly; even when that means enduring an appointment schedule that is running very late.
You can always tell when the phenomena I call Medical Standard time has kicked in. It’s 45 minutes past your scheduled time and you haven’t been called yet; everyone from the receptionist to the Imaging Technician seems to be having a bad day; and the room is full of grumbles and sour expressions.
So what can you do about it without making yourself and the staff crazy?
First off, recognize and accept the idea that despite everyone’s best efforts, delays and schedule mishaps do happen. Those delays are as frustrating to the folks who work at MD Anderson as they are to those of us being treated here. When asking about the cause of the delay, remember the Golden Rule. A polite inquiry will get you a lot further than a beligerent, demanding diatribe.
I’ve found it’s better to plan on tests taking a long time rather than hoping I’ll be done quickly. Take CT scans for example. You know you’re going to spend a couple of hours drinking the Barium mix and trying to keep it down. So why not bring a favorite book, magazine or e-book reader? Or follow your kids’ lead and bring an MP3 player loaded with your favorite music.
Most of the time, I have my iPad with me. Besides being able to use the free Internet access that MD Anderson provides, I’ve loaded several e-books and my writing projects on it. With everything available, if I get tired of one activity, I can easily switch to something else.
Most waiting rooms have a variety of magazines and books available. And many of the clinics have pagers, similar to the ones restaurants use, that will signal you when it’s your turn. That way, you’re not tied to a waiting room and you’re free to get a bite to eat or go for a walk to pass the time.
If you have family or friends waiting with you, encourage them to follow some of the same ideas. If your appointment is going to be especially long, MD Anderson has a great concierge service that can suggest some fun diversions for your family while you are in having your scan. They are a fantastic resource and it’s free for patients and their families.
Are you and your family having a tough time emotionally dealing with being at MD Anderson? That can make the waiting time for appointments and treatment even more difficult. There is a wide variety of personal counseling services available including support groups, social workers and spiritual counselors from a variety of faiths and denominations.
Talking to someone about your feelings can make a huge difference in how you handle your treatment, not to mention your family’s feelings about your cancer. My family and I can tell you first-hand it makes all the difference.
Don’t hesitate to ask for this kind of help when you need it. It’s there to help us get through cancer treatment without feeling so alone and overwhelmed.
Nobody is happy when appointment delays happen; patients; families; providers; no one. Delays mess up everyone’s day. Rather than make a bad day worse, try to take it in stride and adjust your expectations accordingly. You’ll make it easier on yourself and those around you.
And while you’re waiting, remember to thank the staff for the work they do. The ones I’ve met take it as personally as we do when a day goes good or bad. While many of them don’t have cancer, they’re dedicating themselves to helping us beat ours. The fact that we’re usually working with the best in the business is worth the wait and a thank you.
I’ve often said it takes patience to be a patient. Nowhere is that more evident than when waiting for an appointment. Try to think of it this way. We’re here because we need the best treatment in the world to fight our cancer. So when you consider our goal, the wait is definitely worth the time.
July 5, 2012
The reasons for enrolling in a clinical drug trial are undoubtedly as varied as the patients themselves. For me, the reason is simple: I have a rare type of bone cancer called chondrosarcoma and surgery-the usual treatment for someone like me, is no longer a viable option.
Cutting out one malignant tumor agitates the many benign tumors close by and they become malignant. Chemo and radiation aren’t treatment options either since neither one is effective in stopping or even slowing down my cancer. So when I first visited MD Anderson Cancer Center last year for an evaluation about treatment options, participating in clinical drug trials were among the first things my doctors and I discussed.
Enrolling in a trial isn’t a decision to be taken lightly. And like any other treatment option, it is something you need to discuss thoroughly with your healthcare team, your family and friends, and anyone who is a part of your care and support system. MD Anderson offers a handy guide listing the questions you should ask and treatment factors you should consider. Speaking as someone who has “been there, done that” I highly recommend reading this guide.
The process for enrolling in a trial is somewhat like a job interview. Your background, or in this case your medical history, type of cancer and previous treatments are all taken into consideration. The likelihood that the clinical trial will help you is evaluated, along with whether or not you’re healthy enough to participate. And of course, approval from your insurance company is also needed.
Once you’ve been approved for the clinical trial, you’ll receive an initial set of MRI and CT scans, along with x-rays and bloodwork. These tests will become the baseline for the trial. All subsequent scans will be compared with the first set to evaluate the drug’s effectiveness.
How often you return to MD Anderson for scans and drug refills will depend on the protocol or conditions specified by the drug company conducting the trial. The clinical nurse on your trial will quickly become your new best friend and will be able to answer many of your questions about what you can expect in terms of reactions to and side effects from the trial drug.
It is likely that you will change to a different drug trial at some point. The drug may not be effective or the side effects from the drug may be too much for your system to handle. In my case, the drug company conducting the trial suspended it when they determined there wasn’t any difference in response between people who were on the placebo and those who were on the actual drug. This news was doubly frustrating for me since I’d been on the placebo for the first four months and then switched to the actual drug for the next five months.
At first, all the fears that every cancer patient knows about came rushing back, ready to sit beside me and feed on my anxiety and uncertainty. Then it dawned on me: there wasn’t any reason to continue taking medicine that wasn’t helping me. And there were other clinical trials out there that I could qualify for. This trial wasn’t the only one and it didn’t represent my only chance against cancer. All I needed to do was change clinical drug trials. So I did. And that sent the fears away.
The set of scans and x-rays this month will be my baseline for the new trial. I’ve already spoken with the clinical nurse about the new protocol and treatment regiment. After the test this month, I’ll start on the new drug right away. And if this drug doesn’t work, there are other trials coming up. Think about it. If you’re working on something and the tool you need wears out, you don’t stop working. You get a replacement and keep going.
That’s what a new clinical trial represents: a new tool so you can keep on working; so you can keep fighting the cancer; so you can keep living. The idea isn’t to turn you into a guinea pig or a medical experiment. And it’s not to make your ordeal worse by adding nasty side effects or foregoing your pain medications. It’s to give you another treatment option to consider when deciding what course of treatment will work best for you.
And isn’t that why we’re here; to have the best options available for treating our cancer and taking our life back? Speaking for myself, it’s an option I’m glad to have. Maybe it’s an option for you.
June 4, 2012
Tis the season…for graduations. In our case, it’s our daughter Stephanie and the celebration is her graduation from high school. As we did for her brother Nick, we hosted a big blowout. A wide variety of family and friends showed up as part of the celebration.
It’s not just Stephanie’s graduation that we’re raising a glass for. For my wife Sarah, who teaches kindergarten, it’s a celebration of the end of another school year. For Sarah’s sister Liz, it’s a celebration of her birthday. For me, it’s the end of another semester on my trek towards a Master’s degree and the knowledge that I have two classes left, plus my thesis. At this time next year, I hope the celebration has my name on it.
It’s an odd feeling to have both kids finished with high school. With one planning to live on campus and the other one staying at home, we can’t quite call ourselves empty nesters yet, but the time is coming soon. Maybe this year, maybe next year, but it’s coming.
For any parent, I think this time frame leaves you just as confused as the day they were born. In both cases, you know it’s a momentous occasion. And you like to think you know what’s coming next, but you really have no idea. You just hope you don’t do anything to screw up the works.
Not long after Nick and Stephanie were born, I read an article that said parenting is the one pursuit where the goal is to eventually put yourself out of a job. You’ll always be their Mom or Dad. But if you’ve done it right, they don’t really need you anymore. Hopefully then, the time they spend with you from here on out is because they want to.
And maybe that’s the goal that most parents really work towards and pray for: a child that is self-reliant, decent and able to make their way in the world; but who also wants to spend time sharing their life with you. So here’s to graduation and the celebrations they bring, both now and in the times to come.
June 4, 2012
As of May 10th, I’ve been on a clinical trial of a potential new cancer drug for 8 months. The last four of those months I have been on the actual drug. We were initially confused by the news that I’d been on the placebo, since my cancer tumors’ growth had slowed down considerably. One set of tumors, the ones in my right elbow, were showing signs of cell death or necrosis.
Our biggest worry was whether the actual medicine would work. My cancer, chondrosarcoma, is a cancer of the bones and ligaments, and is notoriously hard to treat. It doesn’t respond to chemo or radiation. Surgically removing the tumors is the usual treatment, but in some cases, like mine, removing the tumors activates dormant ones. So when you take a tumor out, you agitate the five tumors around it. Talk about a vicious cycle!
The clinical trial drug takes a different approach than the slash-and-burn of surgery. Researchers have discovered that a pathway exists between cancer cells that helps them grow. Block the pathway and the cancer cell starves. It stops growing and according to theory, shrinks and dies.
I say ‘according to theory’ because my tumors have stopped growing, but have yet to start shrinking. This has left me anxious and my doctors somewhat befuddled. The last set of scans and x-rays, done on May 23rd and 24th, show no further tumor growth, but no shrinkage either.
As of now, the trial continues three one-day visits for bloodwork and refills over the next six weeks, and my next set of scans in mid-July. Sarah and the kids are going along on the July trip. I’m hopeful about the potential for good news then.
As long as my tumors are not showing progression-not growing, I’ll stay on this clinical trial. If I start showing progression, MD Anderson will drop me from this trial and move me to a different one. They have several trials that are either active or in the planning stages, so it wouldn’t be giving up, just changing course.
If I have to change, I can. But I hope it’s not necessary; I hope the current drug works and makes my tumors shrink. But I can’t complain. Last year at this time, my local doctors told me I had between 5 and 15 years to live. This year, we have a new path. We have hope and a future. The plan is to die of old age, NOT bone cancer. It doesn’t get to win. I do.
May 3, 2012
I’ve had this love/hate relationship with cars for the past several years. I’ve always enjoyed driving and have always been a bit of a racing fan over the years. For our first few years in Albuquerque, my son and I were track officials for a local racing club.
Nick would work Start/Finish and actually got to wave the flag. I worked in Race Control tracking laps, timing and guiding the race. It was like being an air traffic controller, but at a race track.
We always had fun, but gave it up a couple of years ago. As my bone cancer worsened, it was harder for me to climb the steps at the race track; we were both tired of getting up at 6am; and we were tired of playing referee between two other people who seem to enjoy fighting more than racing.
So the categorization of cars changed from passion to practical, and I found myself craving a new minivan to replace our 2002 Toyota Sienna, rather than replacing the Sentra with a new Challenger. The van was much easier for me to get in and out of, and had lots of room for my wheelchair and crutches. The Challenger I thought I’d wanted; not so much.
So imagine my chagrin when last Friday, as I lifted the hatchback door of the Sienna open, and heard the door latch snap in two as I pulled on it. Since the brakes had been squeaking, and the front right wheel was making a grinding sound, I knew it was due for a trip to the shop. The busted door latch just sealed the deal.
I made the appointment and dropped the van off. As I thought about the work it would need: new brakes all the way around and a busted door latch, I began to wince. It was close to needing an oil change and tire rotation as well. More cost…the fun never ends.
And as it turned out, I was right. Beside all of the mentioned problems, it also needed a transmission flush and fluid replacement, and an oil change. Great, I thought. Just great. When all was said and done, the total was $1147.00 give and take a few dollars.
But now, the van runs; the brakes don’t squeal and stops are more sure-footed. Since we may or may not get rid of the van this year, it was good it was repairable. That will help it sell. I can’t imagine dealing with all of this AND trying to sell it. We’d probably end up junking it.
So after two days of bumming rides, coordinating schedules with my wife, Sarah, and throwing $1100 down the hole, I have the van back. And I’m grateful. I still think about what vehicle I’ll get next. Whether it’s a van or not remains to be seen.
But one specific fact holds true after a week of dealing with repairs…cars suck. I don’t know what else to say. Sometimes, cars just suck..
April 30, 2012
I’ve been thinking a lot about hope this past week on a very personal level. In my case, it’s more than just trying to be optimistic. It’s more of an acknowledgement of what I’m up against and why hope is important.
My reason for wanting to maintain hope is the fact that I’m a cancer patient and more importantly, a cancer survivor. The type of cancer in my case is a rare bone cancer called chondrosarcoma.
Of the 2400 or so cases of bone cancer diagnosed in the United States each year, only about 720 are chondrosarcoma. Compare that to over 800,000 new cases of breast cancer diagnosed each year and it’s easy to see why you’ve probably never heard of it.
My fight with bone cancer over the past fifteen years has largely been a matter of enduring a variety of surgical procedures, including a knee-joint replacement followed by amputation and several resections when the tumors kept coming back. Last year, the tumors had returned again and my doctor said surgical removal of the tumors was no longer helping me.
He asked me to consider palliative care, sort of an outpatient hospice, while we waited for the tumors to metastasize throughout my body and eventually kill me. He gave me somewhere between 5 and 15 years, presuming nothing changed. Can you imagine telling someone that?
I’m 54, but at the time, I was 53. My wife, Sarah, and I were coming up on our 21st anniversary. Our son, Nick, was in college, and had transferred to a school close to home. And our daughter Stephanie was an honors student in high school. But somehow, last year, I was supposed to just lay down and die.
That was where hope came in. Hope wouldn’t let me give up or give in. Hope demanded that I keep fighting; especially for Sarah and the kids. Hope kept telling me there was another answer out there. Hope helped me find the strength to ask for help and to keep looking. As long as I held on to hope, I knew that no matter what happened, the cancer wouldn’t win.
Last year’s search for an alternative led me to the MD Anderson Cancer Center in Houston. I soon found myself on a clinical trial for a new drug designed for my specific type of cancer. The first few months were touch and go; especially after we learned I had been on the placebo the whole time.
But they switched me to the real drug and within two months we had the answer we’d been hoping for: the drug was working; my cancer tumors were stable and hadn’t moved or grown. Hope had finally won a round. That feeling continued this past week when my blood-work showed things were stable.
Now it’s easy to take a cynical perspective and state that I had it easy. What about people that are terminal or people who have been through trial after trial only to have all of them fail? What about them, Mr. Optimism? It’s one thing to be hopeful when the drug is working and quite another when you’re suddenly out of options.
And actually, I’d agree with you. It is easier to be hopeful when things are going well or when you know you’re having an easier time than someone else. My whole belabored point is that hope is often very hard to find. It can be even harder to hold on to. And sometimes, finding it and holding on to it, or trying to, can seem a little pointless.
I’m not arguing in favor of pointless optimism, but I am saying that by holding on to hope, I’m pushing back against cancer. It’s taken some of my mobility and most of my left leg.
But it doesn’t get to take my ability to laugh, love my family or have a good time. It doesn’t get to take away my enjoyment of life or my gratitude for the friends I have. It doesn’t get to suck my soul dry and turn my life into a bottomless pit of despair, anger and helplessness. Like I said before, it doesn’t get to win and it never will.
So here’s to hope; not just for the rounds it wins, but for staying with us even when it loses. Because life is good. Hope helps us find that, even when things seem their darkest. Hope can keep you going. Hope can find a way for you to laugh, love and enjoy each day. Doing that pisses off both cancer and despair. I can’t help but think of that as a very good thing.
April 28, 2012
After much reading and far too much consideration, I’ve decided to try my hand at blogging. I wanted another outlet for my writing that wasn’t as restrictive as school-based assignments or as personal as a journal. So welcome to my first attempt at something that is completely new to me; both in terms of the blogging format itself and as a way of sharing my writing with others.
I should introduce myself. My name is Mike Snyder. I live in Albuquerque, New Mexico. This blog is one of several writing projects I have going. The one that has most of my attention at the moment is the pursuit of an MA in Communication. This is closely followed by a couple of book projects that are in various stages of completion.
So far, my published writing has been limited to letters-to-the-editor and a few feature articles. I’m hoping blogging gives me another outlet that lets me sharpen my writing skills and share some of my thoughts with others. I hope to spend some time here every day in pursuit of that.
So that’s my story and I’m sticking to it. I’ll do my best to make my postings worth your time and mine. Comments and considerate critique are welcome. Flame-mail and diatribes are not. And I’m sure I’ll stumble from time to time regarding blogosphere etiquette, but bear with me. You were new at this once upon a time as well.
Thanks for letting me share my first attempt.