By Andrew Griffith Andrew
Griffith has mantle cell lymphoma and has had both an autologous (from
his own cells) and an allogeneic (from a donor) stem cell transplant,
in November 2009 and August 2011, respectively He lives in Canada and
is married with two young adult children. He blogs at www.lymphomajourney.wordpress.com and can be followed on Twitter @lymphomajourney.
Just as preparing for a lengthy hospital stay
requires planning, so does returning to home after the hospital. While
your condition and strength will shape the best approach for you, my
experience following my stem cell transplants may be helpful should you find yourself in this situation.
Before you leave get the information you need: Most
hospitals are pretty good in providing written information sheets on
follow-up care, related instructions, and warning signs when and who to
call. Read them and have your caregiver
read and understand them. If they are unclear, ask members of your
medical team (nurses are generally the best on practical questions).
Post them in an easy, visible place so they are quickly accessible when a complication requires you to call. Recognise your weakness: The
nature of the treatment, and the likely limited opportunities for
exercise in the hospital, will mean that you may feel weak upon your
return. In my case, this was particularly acute after being in isolation
after a c. difficile infection (a bacteria that causes severe
intestinal problems), even going up and down stairs was a challenge.
Jon Thompson lives a remarkable life. He's a West Point graduate, a
former pilot in Vietnam and successful business owner. He's visited more
than 42 countries on official U.S. government trips, met with curators
in the Louvre, seen the wreckage of the Titanic on the ocean floor and
is currently searching for Amelia Earhart's lost plane.
You could say he gives the Dos Equis ad-man
a serious run for the "most interesting man in the world" title. For
Thompson, it wasn't a lost bag or plane ticket that interrupted his
life's journey. It was cancer.
When his PSA score jumped double digits, he was referred for a number of biopsies that came back positive for prostate cancer.
A natural researcher and explorer, Thompson quickly began searching for
available treatments. After speaking with a family friend, he learned
about MD Anderson's Proton Therapy Center and decided it was for him.
Outside, a winter storm brings lashing winds and heavy rain to Houston.
But in a surgical suite in MD Anderson's Main Building, Nicolas Salazar
is waking up in a hushed room.
"You're doing very well, Nicolas," he says softly. "How do you feel?"
And
with that, the most important member of the team for an awake
craniotomy, in which the patient is conscious and talking for a portion
of the surgery, has arrived.
'Mapping the brain' before removing the tumor A
63-year-old insurance broker from Lima, Peru, Salazar is having his
second brain surgery in as many months. Diagnosed late in 2011 with a central-brain glioblastoma,
he underwent surgery in Lima in December. But the tumor was too
difficult for the surgeons to remove, so Salazar and his family came to
MD Anderson.
The lead neurosurgeon in Room 23 is Raymond Sawaya, M.D., professor and chair of the Department of Neurosurgery, assisted by fellow Lana Christiano, M.D. Before awakening the patient, they opened his skull to expose the brain.
Now they will "map" the brain, with Salazar's help.
Ed Steger is a head and neck cancer
survivor. He was diagnosed in 2005 and after rough patches in 2006 and
2007 has been in remission. He writes a blog about his cancer experience
at www.hncancer.blogspot.com.
Being more empathetic and compassionate I
understand what empathy and compassion are and believe I have always
had these traits, but to a somewhat limited degree. As a result of my
personal cancer experience, I'm feeling these emotions at a deeper
level. It's one thing to know someone is in pain; it's completely different to actually feel that pain.
Having
had my own pain during the past seven years, I can now more easily feel
the pain of others. I have also had some wonderful role models, who
showed me empathy and compassion during this cancer journey. I still
have a ways to go here, but I do believe it's making me a better person.
Supporting cancer research A friend recently volunteered to make a donation to a research program at MD Anderson. My siblings have made donations
to my cancer center. One of them even asked her co-workers to make
donations to my cancer center. I, too, have made financial contributions
and hope to do more in the future. I believe the research I support
will ultimately lead to improved prevention, early detection and the treatment of head and neck cancer.
Ed Steger is a head and neck cancer
survivor. He was diagnosed in 2005 and after rough patches in 2006 and
2007 has been in remission. He writes a blog about his cancer experience
at www.hncancer.blogspot.com.
How often have you said to yourself, "If only I had a chance to start over?"
Although
I've been living with cancer since early 2005, it was only within the
past year that I had an epiphany: I actually do have a second chance at
life! Not a "time machine" type second chance, but a chance to
re-evaluate my life before cancer and decide how I will live my life
going forward.
Part of this was driven by the realization that I
probably won't die of cancer within the next three months. The other
part was driven by the need to re-purpose my life after meeting a major
goal -- providing guidance and watching my then 13-year-old daughter
mature, graduate from high school and begin her life as an independent
young woman.
That being "done" -- is one ever done? -- the following is what I've decided to do with my second chance.
You know that feeling of being so wrapped up in a good book or great movie that you lose track of time or self? That's very similar to what hypnosis is like; it's a state of highly focused attention that allows a patient to concentrate on a self-created image so that the awareness of his or her current environment becomes less important and less clear.
In the context of cancer treatment, it involves the use of imagery and relaxation to reduce anxiety or pain or overcome some other obstacles.
Medical hypnosis Hypnosis within a medical setting involves a shift in consciousness precipitated by a self-induced concentration exercise. Medical hypnosis empowers patients who are faced with a perceived loss of control and generally improves satisfaction with medical procedures and the hospital experience.
Extensive research indicates medical hypnosis can decrease pain and anxiety and the amount of medications needed in the interventional radiology suite. It can also shorten procedure time.
For claustrophobic patients undergoing MRIs, it has been shown to decrease the non-completion rate for some scans. Relieving pre-operative anxiety has been shown to lower intraoperative anesthetic requirements for some surgeries.
Mind Over Hot Flashes: Part 1
By Leslie Schover, Ph.D., and Andrea Bradford, Ph.D.
Menopausal symptoms, including hot flashes, night sweats, and vaginal dryness, affect many women who receive chemotherapy, radiation to the pelvis, or surgical removal of the ovaries. These symptoms also affect women who were already postmenopausal at the time of their diagnosis, since survivors of several types of cancer (e.g., breast cancer, endometrial and ovarian cancers) are often advised to stop taking hormone replacement therapies containing estrogen.
Hot flashes are the most common symptom prompting women to seek treatment. Although estrogen replacement is the most effective solution, many women don't want to take hormone replacement. Also, estrogen is usually not recommended for survivors of hormone-sensitive tumors. Fortunately, several non-hormonal medications may help, including antidepressants like venlafaxine [Effexor], and the blood pressure-lowering drugs like clonidine, and gabapentin, whichare commonly used to treat neuropathic pain. Although they aren't as effective as estrogen, these drugs offer relief too many women.
Mind over menopause Two new studies suggest that a form of psychological treatment called cognitive behavioral therapy (CBT) also can improve menopausal symptoms and quality of life in breast cancer survivors.
But when MD Anderson patients have a complaint, need assistance or encounter a problem with scheduling, there's someone on their side -- a patient advocate in the Department of Patient Advocacy and Guest Relations.
On their first visit to the hospital, MD Anderson patients are assigned a patient advocate in their disease center. This person will be available to them throughout their care.
"MD Anderson is such a large place. Patients need to know they have a person to call if they have concerns or questions. And that their confidentiality will be honored," says Barbara Bowman, vice president for patient services.
Advocates are available all day, every day. Whether it's about troubling side effects or customer service.
"We're here to help make any situation better," says Chris Hernandez, director of the department. "We want patients to bring issues to us. We're here to help. We'll do everything we can, as quickly as possible, to make a patient's experience a positive one."
Yesterday, famed investor and philanthropist Warren Buffett announced he had stage 1 prostate cancer.
While any cancer is certainly cause for concern, prostate cancer is generally slow growing, and several options are available for men depending on their situation.
Andrew Lee M.D., associate professor in the Department of Radiation Oncology, says stage 1 prostate cancer is localized and has not spread to other parts of the body. Patients are often treated with surgery, external beam radiation or using brachytherapy, a radioactive implant surgically placed near the tumor. For select patients, active surveillance is often recommended depending on their age and other personal risk factors.
Your food choices can impact your chances for developing cancer. And if you're being treated for cancer, what you eat can affect your treatment outcomes.
Every day, MD Anderson dietitians teach patients and survivors how to make healthier food choices. They do this to reduce the possibility of a cancer returning or to increase the chances for successful treatment.
So, what are MD Anderson dietitians eating to stay cancer-free?
How do you get your fill of fruits and vegetables each day?
"Dried fruits are my go to or 100% juice. Dried fruit I can easily add to cereal or just have it as is. Because I don't always tolerate milk well and I'm not as good with my fluid intake, despite my active schedule, I drink an 8 oz glass of calcium fortified orange juice (100% juice). This keeps me hydrated, meets my dietary calcium needs and supports my fruit intake.
"For vegetables, I pre-slice bell peppers to snack on during the day. For example, I'll take the sliced veggies with me to a Mexican restaurant I go to after climbing. I use the vegetables to dip in the salsa. Or, when I go to a pizza restaurant, I'll order lasagna and a salad (no dressing because I generally do not like the taste.) Then, I place a small square of the lasagna on top of my salad. These two techniques help me to maintain my vegetable intake goals." Clare McKindley
By Sarah Pants In July of 2011 Sarah was diagnosed with Cervical Cancer. Scared but determined to fight Sarah uses humor to get through treatment.
I don't know what occurred in my brain that led me to believe that laparoscopic surgery would be "no big deal." I actually used those words to describe it when talking to people about my upcoming hysterectomy.
"Oh, it's all laparoscopic. It's no big deal."
I'd never had laparoscopic surgery, so I don't know where that ludicrous conclusion came from. I was completely overlooking the more important part of the phrase "laparoscopic surgery." It's surgery, and by their very nature, surgeries are a big deal.
My hysterectomy was scheduled to take place 16 days after my diagnosis. I think my doctor would have done it sooner if I'd been able to move in with my parents sooner. My nephews were still in town visiting and living in the extra bedrooms at my folks' house, and I needed a little bit of time to get my own place in order beforehand.
I wound up moving in with them on Aug. 2, doing pre-op all day on the 3rd and having the surgery on the 4th. Once the cancer word is mentioned, things seem to move pretty quickly.
Let the show begin I wasn't nervous until the morning of the surgery. I woke up that morning at a profane hour and stumbled into the living room to find my dad on the couch. He didn't even finish saying "good morning" before I crumbled into tears.
Mindful meditation might sound like a foreign concept to many people, but it's actually a much more common and simple practice than you might realize. In fact, there are two different forms of mindful meditation: informal and formal.
Informal meditation
Informal mindfulness can be a really helpful way to figure out if this is something you will enjoy and works for you because it allows you to integrate mindfulness skills into your everyday life.
Examples include:
Directing attention to and focusing on your breathing to calm yourself right before making a difficult phone call
Listening to ambient sounds in the environment while walking or driving
Mentally labeling feelings or thoughts during an intense or stressful conversation
Focusing on the effect that eating an orange has on all five of your senses
Formal meditation
Formal mindfulness practice takes the informal practice a step further and refers to the actual practice of mindfulness meditation.
It includes the following:
Sustained, disciplined introspection
Allowing one to learn how the mind works
Allowing one to observe the mind's contents
Development through sitting and walking meditations, yoga and tai chi
Micki Fine, who teaches meditation at MD Anderson addressed the benefits of mindfulness last year at TEDEX Houston.
What comes to mind when you think of hospitals? White walls, solemn faces, that sterile smell?
Here, we take these stereotypes into consideration and try our best to stray from the norm. Our staff and in-house programs aim to facilitate comfort and ease throughout the stays of our patients and their families.
Whether you're here for a quick check-up or an extended period of time for treatment, there are a variety of services that can help make MD Anderson feel more like your home away from home. Beauty and Barber Shop: At this style oasis on Floor 6 in the Main Building, patients can receive personalized, one-on-one hair and cosmetic care.
Andrew Griffith has mantle cell lymphoma and has had an auto (November 2009) and an allo (August 2011) stem cell transplant. He lives in Canada and is married with two young adult children. He blogs at www.lymphomajourney.wordpress.com and can be followed on Twitter @lymphomajourney.
Planning
a lengthy hospital stay is a bit like planning any extended vacation or
business trip. The biggest difference being that hospital life means
getting used to no longer being in control. Long hospital stays require
you to accept limited choices and get comfortable with dependence on
others.
Given my experience with lengthy hospital stays as part of my stem cell transplants -- some planned, some as a result of complications -- the following may be helpful, should you find yourself in this situation. Get your life in order:
When faced with a cancer diagnosis the cliché of getting your affairs
in order, for the possibility of death, becomes real. It means opening
joint bank accounts, updating your will, assigning a personal care power
of attorney with a "do not resuscitate" clause if that's your wish, and
any other instructions that will make it easier for family members if
the unfortunate happens.
On the emotional side, if there's need for family or other reconciliations, do it now rather than later.
A simple post on Facebook,
"I'm in a relationship, yes, I am dating again!" I shook my head, as if
I could clear the words from my mind, re-read the post and it would
make sense. It didn't change anything.
The post read the same, but now, was followed by happy tidings for the future. Why was I so upset? Why was this so personal to me?
The
poster's wife of many years had passed away due to inflammatory breast
cancer three months ago. Too soon to date? Not too soon to date? Not
even casual dating, but a "relationship."
I wasn't judging, just stunned.
Just like cancer comes without rules, life post-cancer is confusing. And everyone has an opinion, a suggestion and a horror story, sometimes all rolled into one.
In 2006, while pregnant with
her son, Michelle Mahar - Kasten knew something was wrong. She began to
have worsening discomfort in her hip and numbness in her leg and foot.
She was eventually diagnosed with an osteosarcoma.
Because the cancer was so aggressive and the chance of recurrence so high, her oncologist suggested she seek treatment at MD Anderson.
Within
a month, Mahar - Kasten was living in Houston with her family, including her
mother and in-laws. "We made fighting cancer our number one job," she
says.
After nine months, Mahar - Kasten completed chemotherapy and surgery to remove the tumor in her pelvis and spinal column. Then she had to learn to walk again.
"Surgery left me with limitations and pain for the rest of my life. But it's the reason I'm here," she says.
"I made the choice to fight to survive. I told my family I wasn't going anywhere, and I believed it," she says.
After a long and successful career in broadcast journalism in Houston,
North Texas and Oklahoma, Judy Overton joined MD Anderson in 2008 as a
senior communications specialist. Her husband, Tom, was treated at MD
Anderson for renal cancer. He died in April 2007. Judy's occasional posts will cover aspects of the cancer experience from the caregiver's perspective. Read more posts in this series
I wish people who have never experienced the loss of a loved one would keep things to themselves.
An
acquaintance said to me she felt people could recover from a
debilitating illness if they had a strong faith. I immediately gave her
my two cents. I have first-hand knowledge that is not the case.
Letting him go Tom's
last day on earth was a beautiful, sunny April day. The annuals were at
their height of bloom. A palette of colors decorates our lawn every
spring.
Almost two weeks had passed since Tom left MD Anderson and was under hospice
care in our home. Family and close friends came to see him for the last
time. Every day was a mini-party, of sorts, because he was still alert
enough to "hold court."
So, this particular day didn't have any
mark of the end, at least not the way it started. My sister, Joanie, and
the hospice nurse raised Tom on the lift to give him a bath. Not long
afterward, Tom, sitting up in bed and looking very boyish, received the
Viaticum from our parish deacon.
But then, the hospice nurse pulled me aside, "You have got to let him go," she said. I thought to myself, "But I have!"
Have you noticed how often the media and online world is bombarding you with information about testosterone?
Whether it is a reference to banned substances used by athletes, something that men wish they had more of in their aging bodies, or something having to do with the biology and treatment of cancer, it seems to happen with increasing frequency.
This week, in the journal Cancer another angle on the testosterone story comes forth--the idea that testosterone deficiency can result as the unintended and surprising consequence a new and effective cancer treatment.
Specifically, researchers from the University of Colorado found that crizotinib, the new pill approved by the FDA, because it effectively treats the small subset of non-small cell lung cancer patients (4-7% of patients) who have a specific molecular aberration in the ALK gene, causes rapid suppression of testosterone levels. Those levels come back to normal when the crizotinib is stopped.
Here are 4 things that you might want to know to understand this testosterone issue in a broader context:
I'm a 30-year-old non-Hodgkin's lymphoma fighter. It's not all I am, but it's all I'm focused on at the moment. The purpose of my blog, lymphomamaniac, is manifold.
I want to record this experience, not just for myself, but for anyone who can relate or learn from my experience. I want to let people know that cancer can be funny and cancer is not politically correct. Why should I care about cancer's feelings? Cancer sucks and I'm going to kick its butt.
For
the past two weeks, I've been traveling back and forth 3 1/2 hours each
way to Houston. MD Anderson has been my destination. In that short time,
it has literally become like my second home, which is the biggest
surprise for me.
When my oncologist told me he was referring me
to MD Anderson, he might as well have said he was sending me to jail. I
thought to myself, "MD Anderson?! That place is all cancer-y and sad!"
I
knew for sure it was going to be depressing, smelling like a hospital,
with white-washed walls and floors from top to bottom. There would be
mean nurses with squeaky white shoes and way too many sad patients with
bald heads and sunken faces. It was definitely going to be horrible. Two weeks in Houston! My first contact with anybody from MD Anderson was by phone. She called to schedule my first appointment
with my new specialist. To my surprise she was super sweet and helpful.
She was the one to break the news that I'd be spending at least a week
or more in Houston for my initial evaluation.
"What?," I exclaimed. "Are you serious? Why?" I asked.
Turns
out, I'd be going through a variety of lovely medical tests so my new
doctor could make a more informed decision on how to proceed with the
best treatment,
and the results would take at least that long to come back. They
basically needed me at their beck and call, so I needed to stay in
Houston.
A cancer diagnosis can create a variety of questions for patients who
have children. The first question many parents ask is, "How do I talk to
my child about cancer?"
Whether you're wondering how to tell
your child about your diagnosis, treatment, progression or recurrence,
there are quite a few things to consider before beginning these
important discussions.
To start, consider your child's age and
developmental stage. Some children are too young to verbalize questions
and others may be too afraid to ask. Also, what does your child already
know about cancer?
What is the best approach? It's
common for parents to protect their children by withholding information
that may be upsetting, but research shows the following:
A parent's cancer diagnosis affects a child whether or not the child is informed of the condition. 1
Anxiety
levels are higher in children who aren't informed about their parent's
condition, compared to children where the issue is discussed. 2
For
parents of teenagers, an important aspect of coping is ongoing
communication between the teens and their parents during the course of
the illness. 2
So, what does this research mean to parents? Simply put, it means that honest, age-appropriate communication is best.
The mirror is not always a glowing reflection of one's self. For Jason
Cox, there was a point when he didn't even recognize himself.
Today, though, his reflection shows a successful attorney, a community volunteer and, most important, a survivor.
Like many childhood cancer survivors, Cox overcame his cancer, but not without some challenges and side effects along the way.
In 1985, at 14, he was diagnosed with rhabdomyosarcoma in his right cheek, a tumor affecting muscles that attach to the bone. After a year of chemotherapy at MD Anderson Children's Cancer Hospital, he was declared cancer-free.
But six years later, while attending Texas A&M University,
Cox was dealt another blow. His cancer had returned. He endured more
chemotherapy and radiation, but his cancer kept coming back.
"I
weighed the options of having more recurrences or undergoing a major
surgery that would cause some disfiguration to my face," Cox recalls.
"The decision made itself."
Justin Ozuna lives in Dallas and was diagnosed with chronic myeloid leukemia
in January 2006. His mission is to capture the ups and downs of a young
adult living with cancer and to serve people through humor,
encouragement, hope and adversity at his blog, theozunaverse.com.
In
January 2006, I was diagnosed with chronic myeloid leukemia. Never
could I have imagined that I would be a 25-year-old living with cancer.
I'd soon find out that it wasn't the leukemia
itself that was burdensome; it was the unexpected cost of managing a
chronic illness that led me astray. You won't read that in the doctor's
notes. That's something I had to learn the hard way. I wasn't prepared.
When
you're diagnosed, nobody tells you how difficult it will be to manage a
chronic illness...I was no exception. "That will be $125," the
pharmacist said.
Picking up prescriptions was always a guessing
game. I never knew how it worked. In fact, the only thing I knew about
insurance was that I was covered.
"OK, that seems like a lot of money," I replied.
"The original cost of the medicine, without insurance, is $3,400," she responded.
"Dollars?" I asked. I handed over my debit card as fast as I could.
I
was taking Gleevec, 400 mg daily; one pill a day. "Easy enough," I
thought. In fact, it was easy, for the first seven to eight months. Then
I began to compromise. I had to.
It was easier to pay for my
medicine every third paycheck as opposed to every second. I felt
ashamed, guilty and embarrassed, but it gave me a lot of freedom. At the
time, I needed that.
By Andrew Griffith
