Wednesday, October 20, 2010

October Has Been a DELIGHT! Wonderful Health and Dear Friends!

Hello gang!

I'm happy to report that the month of October has been wonderful.  Much fun and great news on the health-front.

At the beginning of the month, girlfriend Wendy and I went to the condo for about a week.  We've been friends for 30+ years.  Circumstances caused us to drift apart for quite some time.  We both realized that it was time to reconnect.  Wowie Zowie.... did we ever!  

Had an absolute blast at the beach.  The water was COLD, the air temperature was in the low eighties.  Perfect for strolling on the beach, walking to restaurants and bars, and catching up on life.  I'm tickled that she was able to get away to play for a week.

Upon our return, it was time to head back to Tulane for Dom's monthly infusion of Zometa and complete blood work.  From the infusion room, we strolled down the hall for our first doctor appointment in 3 months.  They were absolutely delighted with Dom's numbers:

HCT:  35.4
WBC:  4.9
ANC:  2800

All of his other numbers were great, as well.  The ones that weren't in the "normal" range, were all close to normal, and moving in the desired direction, either up or down.  I'm telling you, gang.... he's like a "superstar patient" at Tulane!  They drew extra blood to check the Myeloma Proteins in his blood.  (M-SPIKE number).  Was hoping to hear the result earlier this week, but we got a phone call that they lost the vial of blood.

On Saturday, our friend Chris came over for the weekend.  Great fun ensued.  I played designated driver on Saturday.  The 3 of us first went to a great dingy dive bar in Bogalusa... "Crystal's Trip".  Hadn't been in there for many years.  It's nothing like the mellow L&C crowd.  A little bit of a rougher place.  Our bartender had a huge black eye from a huge brawl that had broken out the night before.  Got nailed with a pool cue.  Fun place!  LOL

Wendy met us there for a little over an hour.  She and Chris hadn't seen each other for probably 20 years.  We had a great time.

The 3 of us then ventured to our favorite Chinese joint for a late lunch/early dinner.  Chris and I both managed to eat our weight in boiled shrimp.  You can almost feel the *cringing vibes* from the management as we're refilling our plates full of beautiful big shrimp.  Yum!

Home then for my Crimson Tide game.  BAMA slippers?- CHECK!   BAMA beer huggy?- CHECK!  BAMA do-rag?- CHECK!  BAMA sweatshirt?- CHECK!   Roll Tide, Roll!!!!!!!!  And did they ever.  Geez, I have such a crush on Nick Sabin....  LOL

Sunday was much more low key.  The 3 of us ate Buffalo Wings and watched our Saints return to how they looked last season.  We could do no wrong.... other than our stupid kicker.  Time to get rid of the kid.

Finally, Dom and I headed back to Tulane yesterday.  We were parked, in and out in less than a half an hour.  Looking forward to cofirmation of COMPLETE REMISSION.

So, gang....  It doesn't get much better than this.  Life is good.  Dom is presently packing up his Corvette for tomorrow's road trip to Ohio for a couple of weeks.  It will do him a world of good to catch up with lifelong pals and get away from his nagging wife!

We love you guys!

Sunday, October 10, 2010

Caring For Someone With Multiple Myeloma – Part 3: The Toll Of Caregiving

This is the end of the series, gang... hope that it might have helped somebody out there!

By Christine McLaren and Funmi Adewale
Published: Oct 6, 2010 4:01 pm

This article is the third in a three-part series about caring for a loved one with multiple myeloma. The first article provides an introduction to caring for a cancer patient as well as resources for caregivers. The second article provides practical tips for caregivers, and the third article explains the tolls of being a caregiver.

When Nan Manzo’s husband Dom was diagnosed with multiple myeloma in 2008, their family doctor shared some advice about how to deal with the ups and downs of dealing with cancer. “Ants will show up at this picnic. Just brush them off, and keep focused.”
“I can’t begin to tell you how many times we laughed about the ants,” said Nan. “They certainly did show up – repeatedly!”

Many people find that humor can help ease the stress and worry associated with a cancer diagnosis, but caring for someone with multiple myeloma can certainly take an emotional and physical toll.
As your loved one battles cancer, you may experience a range of emotions such as anger, worry, fear, guilt, resentment, and grief. Under the constant stress of supporting your loved one, it is not uncommon to find yourself mentally and physically exhausted.
However, understanding the stress and emotions you are experiencing can help you cope with them.

Financial Implications

When Lori and Dave Puente found out that Dave had multiple myeloma in 2008, Lori quit her job to be his caregiver. She handled his treatment, the payment of medical bills, and communication with insurance providers. “It took a big hit on our finances even though we had insurance,” Lori said.

Chronic illnesses, such as multiple myeloma, can have a significant impact on a family’s finances. People with myeloma may be unable to work as consistently as they had before, and caregivers may leave their jobs to devote their time to caring for their loved one. At the same time, their bills grow due to hospital and treatment expenses. In many cases, it is the caregiver’s job to handle the payment of bills, insurance coverage, and resources that will ease the financial burden.

A study presented at the American Society of Hematology’s 2009 meeting evaluated the financial burden of different myeloma treatment options on patients and their caregivers. Out-of-pocket expenses were calculated to be at least $3,000 annually.
Luckily, aid is available in the forms of health insurance, pharmaceutical reimbursement programs, and other services. Consult with your insurance provider to determine what they cover. If your loved one receives coverage from Medicare, you can receive free one-on-one assistance and advice from the State Health Insurance Assistance Program or from the Medicare Rights Center.

Beyond health insurance, a number of pharmaceutical companies offer reimbursement programs. These include Celgene, the manufacturer of Revlimid (lenalidomide) and thalidomide (Thalomid), and Millennium, the manufacturer of Velcade (bortezomib). For a list of pharmaceutical reimbursement programs, visit the Beacon’s Drug Reimbursement Information links. A number of nonprofit organizations also offer reimbursement. For a list of nonprofit financial assistance programs, visit the Multiple Myeloma Research Foundation website.

Many chemotherapy agents and steroids are no longer patented, and generic versions are available at a fraction of a cost of the branded version. Ask a doctor if a less expensive generic option is available.
Participating in a clinical trial may be another way to reduce the financial burden of treatment and a way to be involved in the process of bettering myeloma treatment for the future. Ask your doctor or visit the Beacon’s list of Clinical Trials links.

Certain non-treatment expenses, such as home care assistance and medical supplies, may also be covered by Medicare or other insurance companies. Be sure to check with your insurance provider.

Mental Health Effects

Watching someone struggle with myeloma can be a very emotional and difficult time for a caregiver. Caregivers usually experience high levels of stress, and according to the Family Caregiver Alliance, between 40 to 70 percent of caregivers have symptoms of depression. These symptoms include changes in eating and sleeping habits, fatigue, loss of interest in people or activities, and ongoing physical symptoms that do not respond to treatment.

While it is natural to feel sad and anxious, if you think your symptoms are more severe, you should consult a doctor. It is important to treat depression properly so you are in the best condition possible to help your loved one.

Although Nan did not suffer from depression, she knew the devastating effects her sadness could have on Dom: “I tried to keep my chin up in his presence, but there were many times that I would cry. I tried to never let him see that. I always tried to remain completely positive.”

In addition to suffering from symptoms of depression, feelings of grief (the process of reacting to loss) are also normal. As a caregiver, you have been involved in all aspects of life with myeloma, so your grief may come and go with each loss and success. You may grieve more as the disease progresses.

Another type of grief – anticipatory grief – may also occur as the disease progresses. This is experienced when caregivers await and anticipate future grief. Grieving is a natural coping mechanism, but do not forget that there is still time to enjoy with your loved one.

Grief will vary from person to person. Bereavement (a state of sadness, grief, and mourning after the loss of someone you care about) may include physical as well as emotional pain. Each person will experience this pain for a different length of time. Some mourn for an extended period of time, others work through the grief process as their loved one’s health declines, and although others mourn, they may also feel a sense of relief that their loved one is no longer suffering.

Some people deal with grief by connecting with family and friends, by reaching out to other caregivers who have dealt with loss, or simply by working through things on their own.

Regardless of your coping strategy, help is available. Ask for advice from your doctor, family, friends, and a support group.

Coping With Lost Responsibility

Of course, the hope is that your loved one will respond favorably to treatment for their myeloma and ultimately be able to resume life as it was before their cancer diagnosis.

If your loved one responds to treatment and as their condition improves, he or she may want to have a more active role in their health care and retake control of some tasks that they passed to you soon after their diagnosis and during their treatment.

Despite being happy about your loved one’s improved condition, it can be difficult coping with the loss of responsibility as your loved one becomes less dependent on you.

Dave and Lori were lucky enough to learn that Dave responded well to multiple myeloma treatment and is in complete remission. As Dave regained strength, he started making his own decisions about his medicine and treatments, things Lori normally had done as his caregiver.

After Dave expressed his desire to take over, Lori found herself feeling lost and not needed. Over the course of a few months, Lori adapted to a new routine by reconnecting with childhood friends in California, visiting her children on the East coast, and thinking about working again. “Now I’m feeling a little bit more ready to go out and look for a job,” she said. “I feel really good now, but it took awhile. It took me months.”

At the same time, your loved one may experience feelings of abandonment if the switch from caregiver to companion is abrupt. Lori advised letting your loved one make their own decisions while continuing to offer support. “Make sure they don’t feel abandoned,” she said.

With Dave back at work, Lori makes sure that she is always available to help Dave when he asks. “It’s a delicate balance,” she said.

But Dave and Lori are thankful for Dave’s remission and that they can now move forward with their lives. “Since he’s being so closely monitored, we can put [myeloma] out of our minds and live our lives,” said Lori. “If it comes back, [the doctors] will tell us, and we’ll deal with it. If it’s not there, we’re not going to sit around worrying about it.”

For more information about caring for someone with multiple myeloma, please see Part 1 and Part 2 of this series.

Sunday, October 3, 2010

Caring For Someone With Multiple Myeloma – Part 2: Practical Caregiving

By Funmi Adewale and Christine McLaren
Published: Oct 1, 2010 1:12 pm

This article is the second in a three-part series about caring for a loved one with multiple myeloma. The first article provides an introduction to caring for a cancer patient as well as resources for caregivers. The second article provides practical tips for caregivers, and the third article will explain the tolls of being a caregiver.

When Lori Puente’s husband Dave was diagnosed with multiple myeloma in 2008, she decided that she would need to take time off from work and her activities in order to give Dave the best care possible. “It was a full-time job with a lot of down time,” she told the Beacon in a phone interview. “Dave would be up at 2 a.m. hungry, and then asleep from 10 a.m. until noon. Whatever his schedule was, my schedule was. It required major adjustments and flexibility.”

For many caregivers, taking time off from work is not feasible. Balancing work and other responsibilities with caregiving is no easy task, so the Beacon has provided practical tips to help busy caregivers manage their time, communicate with health care and health insurance professionals, and prepare for emergency situations.

Making Yourself A Priority

In order to fully perform your responsibilities as a caregiver, you must keep your body and mind healthy. While it may seem that the only option is to devote all your time and energy to combating myeloma, you must focus on yourself as well so that your loved one can continue to rely on you.

Balancing doctor appointments, treatment regimens, and household responsibilities on top of a full-time job may be overwhelming. Caregivers often take time off from work to focus on the patient’s needs. Dianna Allred was able to take nine and a half months off from work to care for her husband, Mark.

While taking time off from work may allow you to spend more time with your loved one, without a job, the illness may completely engulf all aspects of your life. It is important that you monitor your own health by visiting your doctor for routine check-ups and watching for stress-related symptoms.

Symptoms of stress include headaches, back or chest pain, high blood pressure or heart disease, upset stomach, difficulty sleeping, anxiety, depression, irritability, lack of focus, over- or under-eating, or increased smoking or drinking. These stress-related symptoms can make it difficult to concentrate and can make your body susceptible to viruses such as the common cold.

Other ways to stay healthy include eating a balanced diet; exercising for at least 30 minutes a day, four times a week; and striving to sleep eight hours a night. Nan Manzo tries to walk outside to stay healthy, so that she can take care of her husband Dom.

Taking breaks to walk outside, watching a few minutes of television, reading, or indulging in a hobby are useful ways to increase energy and concentration. Little breaks will help you clear your mind and refocus your energy on caring for your loved one. “I took up knitting, which I hadn’t done in years,” said Lori.

With its positive mental and physical aspects, yoga may be a valuable activity to adopt. It is said to improve balance and coordination, reduce stress, and improve concentration. Students of yoga are encouraged to be completely conscious of and love themselves in order to make challenging decisions and to help others. More information about yoga for caregivers can be found at the following sites: Empowering Caregivers and Yoga For Caregivers.

Delegating The Responsibility

Although many caregivers take on caregiving as their full time job, it does not need to be a job for just one person. If another family member or friend offers their assistance, accept it. Sometimes friends and family members may want to help, but may not offer because they are unsure of how to ask and how they can contribute. Have a one-on-one conversation with anyone you think may want to help to let them know what they could do; having a list of specific tasks is particularly helpful.

Delegate responsibility. For instance, as the primary caregiver, you can schedule and attend doctor appointments, research the disease and treatment options, and remind your loved one when to take their medications; Arrange for an assistant caregiver who takes care of the grocery shopping, laundry, house cleaning, lawn care, and other chores around the home.

When you allow and encourage others to help, everyone benefits. Most importantly, the practical and emotional support of others can help you feel less overwhelmed.

Another way to share the responsibility of caregiving is to hire help. At-home nurses or respite helpers can offer the valuable extra set of hands necessary for you to balance the many responsibilities in your life. However, finding a reliable person who gets along with you and your loved one can be difficult. Fortunately, there are many agencies that specialize in locating at-home nurses and aides. “If you’re not happy with the person, ask for someone else,” advised Dianna.

Find out how your loved one feels about receiving care from a hired aide, and ask friends or members of a local support group for references.

Communicating With Health Care Professionals

From diagnosis to treatment and follow-up, hospital visits become a routine part of life for people living with multiple myeloma. Interacting with hospital personnel can be intimidating, confusing, and exhausting. At times, myeloma patients may be too distracted by worry or fear to take control of the situation. Your role as caregiver includes advocating on behalf of the patient by coming to appointments, asking questions, and speaking up for them.
“One of the most important things a caregiver needs to realize is that they need to empower the patient as much as the patient wants to be empowered,” said Lori. During Dave’s treatment, Lori handled everything: filling prescriptions, contacting insurance companies, talking with health care providers, and more. She verified her actions with Dave at each step to ensure he was comfortable with her decisions.

To guarantee the best medical care, you should keep doctors and nurses informed and up to date on your loved one’s condition. Come prepared with lists of the patient’s allergies, recent side effects, and current medications, including dosages. If you are visiting a hospital or doctor for the first time, bring copies of your loved one’s medical history, including previous test records and results to help facilitate the administrative process. Feel free to ask the staff at your regular hospital for copies if you do not have these records.

If you have specific questions for the oncologist, write them down and prioritize them. Nan has found this strategy to be very useful when she goes to doctor appointments with her husband. “I go in with a list and take notes” she said.

If the doctor says something confusing or unclear, make sure to ask for clarification. One way to make sure you understand everything correctly is to state what you think the doctor said in your own words and see if he or she has anything to add. You can also ask for permission to use a recording device.

When the doctor finishes speaking, let him or her know that you have questions and begin with your most important concern. If the doctor does not have time to answer all of your questions, you can ask other medical staff. Nurses can be a great source of information and support, since they are usually responsible for implementing the doctor’s treatment plan.

If you are unsatisfied with a physician’s medical advice, say so. The patient-doctor relationship works best as a partnership; both the patient and the caregiver’s inputs are valuable. Be courteous, yet persistent, to successfully communicate with medical personnel on behalf of your loved one.

The same principles hold true when engaging with insurance providers. Prepare for the conversation by having the patient’s birth date and insurance policy number ready. If the question is about a specific bill, have ready the name and address of the organization that sent it, the total amount, and the diagnosis code listed on the bill. Writing down the questions you would like to ask ensures that you will not forget about any important inquiries.

When the conversation begins, be sure to take down the name and telephone extension of the person with whom you are speaking in case you need to call again. Present your question or case clearly and briefly, and tell the representative what you need and expect. Taking notes as they respond may be helpful. Dealing with health insurance providers is often complicated and time-consuming, so be patient, considerate, and assertive.

Emergency Situations

Multiple myeloma can cause a number of serious health complications such as kidney failure, bone fractures, reduced blood cell counts, and an increased susceptibility to infections. As a result, caregivers should be prepared to deal with emergency situations that require them to act quickly and confidently.

Dianna experienced such a situation after Mark’s second stem cell transplant. “I left [home], and I had only been gone for an hour. When I left he was fine,” she described. “When I got back, he was burning up with a fever. That’s how quickly it can come on.”

The first step is recognizing an emergency. For cancer patients, something as simple as a fever can warrant a trip to the emergency room. Dianna knew the warning signs of a serious problem, thanks to a booklet and a short educational class provided by her clinic. Ask your health care team if they offer any informational publications and classes.

The more information you can bring with you to the emergency room, the better. Be prepared with the same documents you would carry along to a normal doctor appointment: your loved one’s medical history and records and a list of their allergies and medications. Also include the contact information for your primary oncologist and treatment center. These documents contain sensitive information, so keep them in a private, yet accessible, location, such as a lockable drawer.

Another written document to consider bringing is a durable power of attorney. This gives you or whoever is designated the legal authority to make decisions on behalf of the patient in the event that the patient is no longer able to do so. A durable power of attorney form can be obtained at the hospital, from an attorney, or at a state attorney general’s office. Copies of the completed document should be provided to hospital personnel. If you or your loved one is unsure whether this is essential, speak to your doctor or lawyer. It is best to discuss and prepare for every situation beforehand in the event that a crisis occurs.

If you believe your loved one requires immediate medical attention, call 911. Upon arriving at the hospital, find out who the attending physician will be and collect his or her contact information. Make sure you understand what the doctors and nurses are proposing before making a decision. You can use some of the strategies presented above for talking with health care professionals, such as repeating what the doctor or nurse said in your own words.

Your loved one will probably be assigned a hospital social worker or case manager. When possible, sit down with this person and plan for your loved one’s discharge from the hospital. Be proactive about getting information from the physicians, nurses, and other personnel involved in your case.

Another thing to remember is that all situations are best dealt with calmly, and it is important to always keep the interests of your loved one in mind. Emphasizing the need for good communication between caregivers and patients, Lori said, “Everything I do with [Dave’s care], I have to keep in mind who he is.”

Friday, October 1, 2010

Caring For Someone With Multiple Myeloma – Part 1: Introduction To Being A Caregiver

Hi gang-

Thought that this might be of interest to some of you.  The Myeloma Beacon is an online fountain of information, and has been VERY helpful to me... a "caregiver".   Funmi interviewed me for this article several months ago.  Thought I'd share it with you guys....

By Funmi Adewale and Christine McLaren
Published: Sep 29, 2010 3:20 pm

This article is the first in a three-part series about caring for a loved one with multiple myeloma. The first article provides an introduction to caring for a cancer patient as well as resources for caregivers. The second article will provide practical tips for caregivers, and the third article will explain the tolls of being a caregiver.

In October 2008, Dianna Allred’s husband, Mark, was diagnosed with multiple myeloma after suffering a severe spine fracture.

As Mark’s pain increased dramatically after the fracture, Dianna took action. “I called the doctor and told them we needed an MRI. Something was just not right,” she described in a phone interview with the Beacon. An MRI and a CAT scan later, Mark’s myeloma was diagnosed, and in Dianna’s words, “The ball started rolling from there.”
Immediately, Dianna assumed the role of Mark’s primary caregiver, the person who would help him cope with cancer.

A study by the National Alliance for Caregiving in collaboration with AARP, called Caregiving in the U.S. 2009, estimated that 65.7 million adults in the United States (29 percent) provide care for loved ones with a range of special needs.

While there is not a single specific type of caregiver, the study determined that the average age of a caregiver is 48 years old, and 66 percent are female. The study also found that caregivers provide an average of 20 hours of care a week. Constantly on call, a caregiver’s work varies from managing prescriptions to being a companion in times of emotional hardship. It can be an overwhelming task, especially if the caregiver has a full schedule of his or her own.
Fortunately, there are resources for caregivers who are looking for advice or wanting to connect with others in the same situation.

First Steps For Caregivers

Prior to diagnosis, most people have never heard of multiple myeloma. This was the case for Nan Manzo when her husband Dom was diagnosed in the spring of 2008.

“We had never heard of it,” Nan said in an interview with the Beacon. “All we knew was the big C: cancer. We were just absolutely shocked. And then [the doctor said], ‘All is not lost. You’re a good candidate for a stem cell transplant.’ Our mouths dropped even further, ‘What is a stem cell transplant?’ It was just so much information at once. Our heads are still spinning.”

For Nan and Dianna, the first step after learning of their husbands’ diagnoses was to educate themselves about the disease. Caregivers can learn more about multiple myeloma through physicians, nonprofit organizations and foundations, reputable websites, and blogs written by myeloma patients.

It is important to be careful when researching on the Internet because not all the information is credible. Keeping a journal of informative websites or questions to ask at the next doctor appointment may prove helpful. Important topics to research include treatment options, side effects, and clinical trials.

The amount of available information can be overwhelming and paralyzing, making it difficult to know where to begin. As a caregiver, remember that you do not have to know everything.

You can start by connecting with more experienced patients and caregivers, just as Mark and Dianna did. Through a chat line provided by their treatment center, they met Doug Carlsen, a multiple myeloma survivor.
“He was wonderful. He told us what to expect when we first found out about myeloma. We got his name from the hospital, and we just called him up and talked to him. He walked Mark through this. It calmed our nerves just to be able to talk to somebody who knew what we were in for,” Dianna explained.

While learning about multiple myeloma, it is also important to learn how to care for someone with cancer. Similar to learning about the disease itself, you can gather more information about being a caregiver from the Internet, brochures, and books.

As you educate yourself about the disease and your role as a caregiver, remember to take one webpage and one topic at a time. And take breaks! There is no possible way to learn it all in one day, so pace yourself. Although researching takes time and energy, information can be empowering and can contribute to greater peace of mind.

“Knowledge is power,” Nan advised. “Ask questions, take notes, and go home and research. It makes it a lot easier to comprehend and understand what they’re doing when you know how the whole thing works.”

Resources For Caregivers

There are a number of websites specifically for caregivers, such as the Family Caregiver Alliance, National Family Caregivers Association, and National Alliance for Caregiving, which provide information and advice, chances to connect with other caregivers, and research on caring for a loved one. Some websites for caregivers, such as Everyday Health, specifically provide information for multiple myeloma caregivers.

Check with local branches of patient advocacy groups for seminars and workshops offered to caregivers. The American Red Cross has a training program, called Family Caregiving, that covers topics such as caregiving skills, healthy eating, legal and financial issues, and caring for a caregiver.

While caregiving websites can provide general advice, blogs can provide insight into life as a caregiver. The Beacon’s Links section lists many blogs written by patients and caregivers, including Dianna and Nan and another caregiver Lori Puente. These patients and caregivers write about their progress, setbacks, treatments, emotions, and personal thoughts.

It is important to remember that you are not alone throughout this process. Connecting with other caregivers can help you learn more quickly about myeloma and being a caregiver, and it may be comforting to be able to share with others during the ups and downs of life with myeloma.

If you can, take a couple of hours each month to participate in a local support group. The Leukemia & Lymphoma Society, International Myeloma Foundation, and the Multiple Myeloma Research Foundation can connect you with support groups in your area.

If you do not have the time to attend support group meetings or if there are not any nearby, you can participate in Internet discussion boards, such as the Beacon forums, from the convenience of your home. This approach allows you to connect with other caregivers over great distances. There are also a number of forums and public chat groups for myeloma patients and caregivers available through the myeloma foundations, treatment centers, and also many e-mail servers, such as Yahoo!, AOL, and MSN.

For more information about caring for a loved one with multiple myeloma, please check back for Part 2 and Part 3 of this series.