The Leukemia & Lymphoma Society Blog

Guest Post from Mike Hamel, Lymphoma Patient, Cancer Blogger and Author

millss — Mon, 18 Aug 2008 18:33:23 GMT

I really enjoy reading (and writing!) blogs. A blog provides a less formal environment to share information than other forms of writing, and it enables regular people to have their voice be heard by potentially anyone and everyone. I feel pretty privileged to be able to read people’s personal cancer experiences through their blogs, and was delighted to be introduced to Mike Hamel’s blog, Cells Behaving Badly.

Mike was diagnosed with lymphoma in early July of this year, and is taking the time to document his experience. He writes regularly and with a wonderful sense of humor that makes the experience sound less daunting.

Mike has graciously given us permission to share one of his blog posts with you, so without further ado, read on!

A Client, Not a Patient

^{Mike Hamel, client, and Nurse Sharon}

I won’t be able to change the nomenclature of the medical profession but I refer to myself as a client, not a patient. By definition, a patient is “One who receives medical attention or treatment.” The archaic meaning was “One who suffers,” from the Latin verb meaning “to endure.” A client on the other hand is “The party for which professional services are rendered.”

Catch the nuance? A patient is the object of medical care, a client is the subject of medical services. In language as in life, an object is passive, a subject is active.

A patient complies with the experts. A client consults the experts, then follows what seems the best advice.

A patient might complain but would never contradict an authority. A client will ask questions and weigh alternatives before deciding.

A patient goes where sent and doesn’t change doctors or clinics. A client tries to find the best physicians and facilities realistically available.

A patient asks “What?” A client asks “Why?”

Being a client takes a lot more work. I have to educate myself about my condition and treatment options. It’s a daunting but doable task thanks to the Internet. There are plenty of reputable sites with reliable information the average person can understand. (See the LYMPHOMA INFO box in my sidebar for a start.)

Oncologists know a shipload more about lymphoma than do its sufferers, but they don’t know everything. It’s impossible to keep up with the ocean of new information. A dialogue with a well-informed client could suggest new possibilities to a thoughtful physician.

When I see Dr. Kurbegov in two weeks, I’ll ask if radioimmunotherapy is an option for my type of lymphoma based on an article I read in the New York Times. I’ll ask about any clinical trials for which I might be a candidate, especially those sponsored by the MD Anderson Cancer Center where Dr. Kurbegov was a Chief Fellow.

I’m not trying to play doctor or impress anyone with my research skills. I’m just trying to understand my cancer and to be proactive in eradicating it. After all, it’s my life.

Learn more about Mike by visiting his blog. It’s possible you may already be acquainted with his books which include the Matterhorn the Brave series, as well as The Entrepreneur’s Creed.

Consider these "client" resources as you manage your diagnosis and treatment:

Tell Us Your Story!

millss — Fri, 09 May 2008 15:32:29 GMT

First things first - we have a favor to ask of you! Consider sharing your story with us via our Tell Us Your Story contact form that we recently added to the website.

We have a lot of ways that we can keep in touch with our web visitors.

There is a great network of websites, including our main one, www.LLS.org.
There is this blog, The Leukemia & Lymphoma Society Blog.
We have regularly scheduled telephone education programs.
We also provide several e-newsletters that our visitors can subscribe to.

These are just a few ways that we can keep you informed online.

On top of the above communication channels, we recently decided that our online contacts need to read about the people who have been positively affected by The Leukemia & Lymphoma Society (LLS). Right now we have elements of this, but we decided to devote some of our emails with real stories of people who have been helped in some way by our work. These are people who are battling blood cancer, may be in remission, or caregivers taking care of someone with blood cancer. We haven’t sent any messages out yet, but if you are an opt-in contact* you should receive our first story soon.

What we’d really like is to hear from you so we can tell our contacts your story. Have you utilized any of our resources during or after diagnosis? Do you volunteer with us in any capacity? Do you participate in any of our events? If the answer is yes to any of these questions, please go to our Tell Us Your Story contact form and let us know your story.

If you don’t have a story you’d like to share, but you still want to contact us, I’d suggest using our main contact form so your question or comment can be routed to the appropriate staff person more quickly.

*An opt-in contact is someone who has agreed to be contacted via email by The Leukemia & Lymphoma Society. This type of agreement can take place while you’re signing up for an e-newsletter or by filling out one of our online contact forms.

Lymphoma in the Blogosphere*

millss — Mon, 05 May 2008 18:15:29 GMT

You may remember that a few weeks ago we looked at a couple of personal leukemia blogs. This week I thought I’d take a look at lymphoma in the blogosphere.

I just went to Google Blog Search and typed in “lymphoma” – results are well over one million (1,165,066 at the moment) for all time. I then clicked on “last day” in the left column and 190 results were pulled up. A lot of people are talking about lymphoma – and their experiences are very diverse.

Bill, a.k.a. Billy Bird on his blog, recently started to write Lymph Notes. He was diagnosed with lymphoma on December 24, 2007. Recently someone asked him what having cancer has taught him, and he provided his answer on his blog:

I hope that the biggest lesson I have learned is to continue to think positively. Without doubt, I have created a new future committed to allowing myself to love and to accept love, or at least to work on developing such an outcome. That pledge, combined with an ability to think positively, will be the lesson I hope I never forget.

Another blog, A Pastor's Cancer Diary, is written by Carl. He was diagnosed with non-Hodgkin lymphoma in 2005. His posts are filled with anecdotes and spiritual advice for every day life. Earlier this month Carl reflected on the challenges of cancer:

I realize that, in the cancer world, there are far more serious pains, far more grueling challenges than those I’ve had to undergo. Each fresh obstacle presents its own level of difficulty. Yet, I’m coming to realize this same principle holds true, at every level. God is right there with us. The sound of sheer silence speaks. Together we travel, one step at a time.

Do you write a blog? If so, we’d love to take a look!

Learn more about the lymphomas:

Read more on our Lymphoma section on lls.org.
Download the free The Lymphomas booklet (.pdf).
Listen to past audio teleconferences accessible via our Lymphoma Education Series section on www.LLS.org.

*From Wikipedia.org: Blogosphere is a collective term encompassing all blogs and their interconnections. It is the perception that blogs exist together as a connected community (or as a collection of connected communities) or as a social network.

Taxes and Medical Expenses – What you need to know

millss — Fri, 11 Apr 2008 19:37:01 GMT

April 15 is fast approaching. For those of us who haven’t submitted our tax returns to the Internal Revenue Service (IRS), here’s some information about deductible medical expenses that may make tax time less stressful. There’s a whole list of possible deductions from acupuncture to transportation on the IRS website.

Here are a few things that you may be able to deduct if you or certain family members have medical expenses related to a blood cancer or other medical conditions:

Capital Expenses – These would include special equipment that you’ve installed in your home, or actual renovations to your home that is in direct relation to your condition (for example, widening doorways for wheelchair access).
Hospital Services – This would include inpatient care at a medical facility (for example, meals and lodging related to medical care).
Medical Conferences – Being able to deduct this would require that you have attended the conference in direct relation to the patient’s illness, but note that meals and lodging cannot be included.
Nursing Services – These services can be in home or in another care facility.
Wig – In general, you can deduct the cost of a wig purchased with a physician’s advice for a patient who has hair loss that is disease-related.

A few things to keep in mind:

Use Section A, Form 1040 to report medical deductions. Learn more about how to fill out this form.
To submit medical deductions, you need deductible expenses that equal more than 7.5% of your adjusted gross income. Let’s say your adjusted gross income is $50,000. You would need to have at least $3,750 in medical expenses to be eligible for a deduction.
You can only deduct medical expenses that were paid this year. In other words, what matters is when you or your dependents paid for medical procedures or devices, not when you received them.
A list of things that you will not be able to deduct can be found on the same page as the list of expenses you can deduct.

Even if you have already submitted your tax return to the IRS for 2007 this is information that can be of help for next year. If you expect to continue to pay for medical expenses this year, make sure you keep your records handy for when you meet with your accountant or when you fill out your taxes.

Find more information about your finances and health matters.

Have you already turned in your tax return? Do you have ideas to share about organizing your tax receipts, especially medical expenses?

Sexuality, Cancer and Quality of Life

millss — Mon, 07 Apr 2008 20:17:48 GMT

Spring finally arrived a couple of weeks ago. The weather is still a little chilly here in New York, but the temperatures are definitely trending upward. Before you know it the flowers and trees will start blooming all over again, and I’ll want to write blog posts from the shade of a tree instead!

Spring can be invigorating after a long, cold winter. But for couples who are dealing with the effects of cancer and its treatment, the arrival of spring may not feel the same. This may have been a season you've associated with spending more time with your partner--taking walks, holding hands and showing affection. It's natural to want to relate to your partner in intimate ways...to touch, hug and kiss, to give and receive love. But people with cancer sometimes feel removed from sexual and intimate experiences for any number of reasons.

Some patients or their partners may feel that

These are not life or death issues and don't deserve their attention.
Sex should be the last thing on one's mind.
They are being selfish for being concerned about sex.

Sexuality is not just about physical needs, but also about psychological, social, emotional and spiritual factors. It includes self image, body image, reproductive ability, emotional intimacy, sensual feelings and sexual functioning. Discussing sexuality-related concerns may be important to your quality of life in areas that are not limited to sexual functioning, such as, feeling comfortable with yourself and enjoying close communication with loved ones.

Learn more about how can you cope when your cancer has affected your sexual and intimate relationships by downloading our Sexuality and Intimacy fact sheet.

Also take some time to listen to our recent teleconference, Sexuality and Intimacy After Cancer, a telephone education event that featured Sage Bolte, MSW, LCSW, OSW-C.

Consider sharing your experiences here. Has cancer affected your relationship with your partner? How have you and your partner handled this?

Visit our Cancer Centers webpage on LLS.org

millss — Wed, 02 Apr 2008 19:59:30 GMT

Good quality healthcare is important at any time in life. When you or someone you care about has cancer, finding quality care by may be especially time-sensitive. Visit our webpage Choosing a Treatment Center to learn about types of cancer care facilities, including National Cancer Institute (NCI)-designated Comprehensive Cancer Centers.

LLS also has a Web page that lists these NCI-designated Comprehensive Cancer Centers. You can find the centers by either clicking on the map on the page or by scrolling down and looking through the list of centers. The list is organized by state in alphabetical order, so it's easy to find out if a center is located near you.

You might be interested in our Co-Pay Assistance Program, too. This year-old program helps qualified blood cancer patients with some costs including health insurance premiums, co-pay obligations and Medicare fees. Find out if you're eligible.

You can find out about other ways to get help with health care costs by visiting the Financial Support section on our Web site.

Already involved? Let us know about your experience with our programs by commenting on this blog post.

The costs of cancer

millss — Fri, 21 Mar 2008 13:41:33 GMT

Unless you’ve been hiding somewhere, you’ll know that the economy is having a little bit of a tough time right now. The headlines I’m seeing as I’m typing this are:

“Cash strapped, and driving less”
“The next shoe to drop in housing”
"Financial markets looking for bottom”
“A slice of pizza gets pricier” (And yes, that’s a real headline – and a real shame for pizza lovers.)

It’s not easy dealing with a strapped economy when you’re well, let alone when you have a disease like cancer. You might already be feeling uneasy about your job, retirement income, and assets. On top of everything else you now have medical bills. It’s crazy, and it’s making you crazy (I would be anyway).

The Leukemia & Lymphoma Society (LLS) can’t solve all of your financial woes, but we have a few resources that may be able to help you find some relief.

Patient Financial Aid – This program reimburses for some medications, transportation costs, and procedures.
Co-Pay Assistance Program – This program helps with co-pay and prescription medication costs.

There is also a wealth of advice about your employment rights as a cancer survivor, issues with insurance, and other programs that help with prescription drug coverage.

Finally, there is an archived teleconference in the Survivorship Education Series section of the LLS website called, “Cancer Survivorship: Practical Tips for Managing Your Financial and Insurance Issues.”

What do you do when your medical bills become too high? Are you going through this now?

If you think someone you know would benefit from this information share this blog post with them.

Have you just been diagnosed with cancer?

millss — Tue, 18 Mar 2008 16:40:04 GMT

I’ve been spending a little time today reading the Patient Services Discussion Boards, specifically the Newly Diagnosed board. It’s heartbreaking to read some of these posts. A lot of these new cancer patients and their caregivers are scared, feel helpless, and alone. Participating in our online community allows them to find the immediate emotional support they need.

These people are also looking for resources – many of which The Leukemia & Lymphoma Society (LLS) provides.

In just got the dx dkvpv looks for questions to ask her doctor:

“…my Dr. said we would sit down and talk. I'm very scared and numb. What should I expect, what should I ask?”

The LLS website has a page called, What to Ask After Diagnosis. It has a variety of printable question guides which can be of help during different conversations a cancer patient may have while sitting down with their oncologist.

In NH folicular lymphoma Me2RN looks for peer support:

“At times I feel set apart from others and would like to just talk about it with people who feel like I do or have the same experience. I have a great support group around me but they do not have cancer.”

LLS offers First Connection, which is a peer-to-peer support program. You can sign up to receive a call from a trained volunteer who has been through it, just like you. Both patients and caregivers can utilize this helpful program.

In New dx of CML-scared to death!! LauraB523 wants to know how to cope:

“So, does anyone have any advice or coping skills to pass along? I have some good days but also some bad. Just a lot to deal with right now!!”

Along with many other free materials, LLS offers the Coping support booklet (.pdf) which can either be downloaded or received by mail. It’s geared towards people living with leukemia, lymphoma and myeloma.

There are many other online resources available to people who have been newly diagnosed with one of the blood cancers. It’s not easy to find out that you or a loved one has cancer, but it can be easy to find the help and support you need on our website. Can’t find what you’re looking for? Give us a call or send us an email.

Seven (yes, seven!) new podcast feeds

millss — Tue, 04 Mar 2008 19:13:31 GMT

We sponsor a lot of very interesting teleconferences, but they usually take place on a weekday in the middle of a day. This means that many people who are at work or busy doing something else are not able to listen to these live events. Luckily we have our telephone education programs archived on our website, and additionally we have several podcast feeds.

Up until just a few days ago we had three podcast feeds:

Blood CancerCAST – all of our teleconferences
CML LinksCAST – Chronic Myelogenous Leukemia teleconferences
Lymphoma LinksCAST – Hodgkin and Non-Hodgkin Lymphoma teleconferences

We just added seven more podcast feeds to make it easier for people to listen to the teleconferences they are interested in. Here’s a list of our new feeds:

AML PathwaysCAST – Acute Myelogenous Leukemia teleconferences
Childhood CancersCAST – teleconferences related to the childhood cancers
CLL LinksCAST – Chronic Lymphocytic Leukemia teleconferences
MDS CAST – Myelodysplastic Syndrome teleconferences
Myeloma OutlookCAST – Myeloma teleconferences
Non-Hodgkin LymphomaCAST – Non-Hodgkin Lymphoma teleconferences
SurvivorshipCAST – teleconferences related to practical information for those living with the blood cancers

Okay – so a lot of people may not know what RSS or podcasts are. I’ll try to explain.

Really Simple Syndication (RSS) has been around for quite a while (since about 1999), but it hasn’t really taken off until the last few years. Personally, I didn’t really start to utilize it myself until a couple of years ago, but now I am taking advantage of it on almost a daily basis.

RSS allows you to read content from all of your favorite websites in one place. Do you find that you don’t have time to visit all of those websites on a daily basis, but you still want to read their content? The solution is to create an account with an aggregation service like Google Reader or Newsgator, then add your favorite website’s feed to the aggregator. At this point those websites syndicate their information to you.

A podcast feed acts the same way, except instead of text-based content, websites (like ours) can syndicate their digital media files (like teleconferences) to you. With our podcast feeds you’ll always stay up to date when there is a new teleconference, making it so you have less of a chance to miss that important and informative information.

Learn more about our new feeds and RSS on our LLS News Feeds and Podcasts page.

Leukemia in the Blogosphere*

millss — Tue, 12 Feb 2008 14:52:53 GMT

Take a few minutes and go to a website like Technorati. Type in the search bar “leukemia” and see how many blog posts come up. I just did a search and as of right now it says that 677 posts are tagged “leukemia” and there are 152 blogs about leukemia. There are also quite a few videos and photos.

It’s inspiring to read some of these blogs. It’s clear that writing about their experiences with cancer, whether they are a patient, caregiver or family member, is therapeutic and relieving. Not only are they helping themselves, the people who run across their blogs are finding hope and encouragement.

Take a look at How's Dave Doing?, a blog written by Anna about her husband Dave’s battle with leukemia. It’s both touching and informational. Read her recent post reviewing our very own Emerging Therapies for Blood Cancer Patients seminar held in San Francisco.

It was a strange feeling to sit in a huge ballroom, filled with hundreds of people, and think, "Most of these people have Leukemia or Lymphoma." You'd see a couple, and try to guess which one was the patient and which one was the caregiver, and it wasn't possible.

Another blog, The Plog, written by PJ, is about a woman’s experience as a leukemia patient and cord blood transplant recipient. She writes both about normal day to day experiences and surviving cancer. In January she celebrated her birthday with a morning run:

What made me go out for a run this morning at 7:30 when the temperature flirted with thirty? The flip answer is: because I could. The real reason I braved black ice was that today marks the completion of 54 years of living. There were moments over the past 22 months when I didn't think I'd survive to celebrate this day, let alone run two miles. My mother died of cancer when she was 53, and ever since I received my leukemia diagnosis at 52, it's been impossible for me not to dwell on her untimely death. Those were footsteps I did not want to follow.

Do you have any favorite personal cancer blogs that you follow? Do you write one?

*From Wikipedia.org: Blogosphere is a collective term encompassing all blogs and their interconnections. It is the perception that blogs exist together as a connected community (or as a collection of connected communities) or as a social network.

From the Action Center: Clinical Trials in Danger - Urge your member of Congress to Support HR 2676

millss — Tue, 29 Jan 2008 21:35:43 GMT

Currently, many adults do not participate in clinical trials because insurance companies refuse to cover routine care expenses for patients who choose to enroll in a clinical trial. Increasing participation in clinical trials is one of the best ways to speed new cures to the doctor’s office, the hospital bedside, and the infusion room. Fortunately, Congresswoman Deborah Pryce has introduced a measure, H.R. 2676, which would require insurance companies to cover routine care expenses for patients enrolled in clinical trials. However, Congresswoman Pryce’s measure needs your help. Please contact your member of Congress to urge them to cosponsor H.R. 2676.

Cleared for takeoff – “The Leukemia & Lymphoma Society Blog” launches!

millss — Wed, 23 Jan 2008 19:14:44 GMT

Today we are launching The Leukemia & Lymphoma Society’s first blog! There are a few things that we hope to accomplish with this new communication tool, but most of all we want to make this an informative and interesting destination for you: patients, caregivers, and anyone else affected by any of the blood cancers.

A few topics we plan to cover are advocacy, teleconferences, news articles, and more…

We’d love to get ideas from you, though. What do YOU want us to write about? (To comment you must first register if you haven’t already – registration is easy and free!)

To make sure you are the first to know when we have posted a new blog entry subscribe to our RSS feed. Or you can bookmark this webpage in your browser and visit us often.