Post-Treatment Letdown
Monday July 13, 2009
Who knew that you could actually "miss" your cancer treatment? For someone who's never experienced cancer and its aftermath, this may seem like a very strange thing indeed. But after years of helping individuals with cancer through the cancer care process, I can say that it's all too common.
I wanted to write about this very important topic simply because it is so poorly understood by non-cancer-survivors. If by bringing to light the issue of post-treatment letdown, I can help one person out there to feel a little less lonely and a little more "normal", then this is worth my time and then some!
Blogging about this topic in the New York Times, Dana Jennings puts into words what so many cancer survivors feel, but may be embarrassed to admit: They miss their cancer care. The reasons for this are many, but the important thing is that it's okay to acknowledge that you miss aspects of your cancer care.
It's not likely that you miss things such as lower blood cell counts, nausea, and large chunks of your days being taken up running from appointment to appointment or being tethered to an IV pole while undergoing cancer treatment. But it's completely normal to miss the security and stability of the same appointments at the same time on a regular schedule. And it's normal to miss your doctors, nurses, and fellow cancer care recipients too.
How to Cope with Letdown?
If you're trying to cope with post-treatment letdown, there are lots of things you can do to work through this:
- Acknowledge your feelings and acknowledge that these feelings aren't "weird" or "abnormal". You are not a glutton for punishment and missing certain aspects of your cancer care does not mean you "wanted to be sick".
- Let your doctor, nurse, or other care providers know, either with a phone call or a short note, that you appreciate all they have done for you and that you miss them and look forward to touching base at your next appointment, even if that appointment is 3 months, 6 months, or a year away. I guarantee it will make your health care providers day to receive a 30 second voice mail message or a short note from you saying "Hello", and you'll feel better as well.
- Call your cancer treatment facility and ask if there are any post-treatment or long-term survivor support groups available. You can attend one, two, or more meetings to find your way to a comfortable post-treatment routine. It doesn't mean you're committed to the group for years, just that you can use a little support right now.
- Give back. One thing that some cancer survivors find very rewarding is to volunteer some time to give back to the cancer care community. The commitment can range from a one-time project, such as helping organize the patient lending library, to a long-term commitment to be a "cancer buddy" or mentor to someone else who's been diagnosed with cancer. Before you do any of these actions, be sure that you feel good enough, physically and emotionally to participate. Just as it's okay to admit you are feeling discombobulated without your cancer care routine, it's okay to admit that you're not ready to "be around cancer" just yet.
Do You Want to Help Others?
Monday July 13, 2009
I recently was notified about a research project that aims to investigate how the use of online support groups by people with health conditions affects their feelings about themselves and their illness and how this impacts their relationship with their health care provider.
You may wonder why I'm telling you about this. It's simply because I believe that by volunteering about 15 minutes of your time to complete an anonymous online questionnaire, you can help others. This is exactly the type of research we need to better understand how computer-savvy health care consumers in the 21st century are getting and using support and information. This is the type of research that will lead to the development of better online support groups and communities for us all. And the best part is that this can help us all become wiser health care consumers.
If you have a few minutes to spare, please take the survey and become a part of the future of better online experiences and better health care interactions for us all. Thank you!
Vitamin D-Lightful
Friday July 10, 2009
If you get the feeling that you're reading and hearing a lot about vitamin D lately, you're not alone. This vitamin has been receiving quite a bit of press lately, and with good reason. The last few years have seen an explosion of research on this nutrient and the conclusions of these studies pretty much agree: vitamin D is very important for long-term health and most of us don't get nearly enough of it.
Want to reduce your risk of cancer? Get more D. Want to reduce your risk of heart disease? Get more D. Want to minimize your odds of getting multiple sclerosis, lupus, or other autoimmune conditions? Get more D. Want to better manage your asthma and other respiratory conditions? Again, get your vitamin D! It's the rare (OK, never) time that I say, "Everyone needs this supplement," but vitamin D is one nutrient for which I make an exception.
A study presented at the 2009 American Society of Clinical Oncology meeting now suggests this is true for individuals with cancer, especially those with gastrointestinal (GI) cancers.
For the vitamin D study, which included 98 people with colorectal cancer, the researchers reviewed medical charts of people treated for GI cancer between December 2007 and September 2009. They found that at baseline, nearly 90% of the patients had vitamin D deficiency. That's the bad news.
The good news is that the chart review also uncovered success. When the people with GI cancer were prescribed vitamin D supplements, most of them responded: Their blood levels of vitamin D increased markedly after 8-12 weeks of supplementation. The patients were given 50,000 IU (international units) of vitamin D, once per week, for a total of 8-12 weeks.
When blood levels of vitamin D were rechecked after supplementation, the rate of any vitamin D deficiency, including very mild deficiency, decreased from 91% to 57%. Cases of severe to moderate deficiency decreased from 72% to 13%.
Is D for Me?
Yes, but with caution. The 50,000 IU dose that was used to bring vitamin D levels up to normal are very, very high. These doses are safe, when taken short-term, under close medical supervision. Never supplement with 50,000 IU of vitamin D on your own. Work with your medical care team so that your blood levels can be checked and you can know your body is responding to the supplements as intended.
If you want to supplement with vitamin D for general good health and to make sure you are getting enough, it is safe to take up to 2,000 IU of vitamin D per day. Fortunately, vitamin D is inexpensive, so taking a supplement won't break the bank. A 30 day supply costs about $3 to $5. If you are in cancer treatment and you are concerned about your vitamin D levels, ask your doctor to be tested. A simple blood test will tell you whether you need higher doses of supplements to get yourself back up to normal.
Family History - You're Invited to The Conference
Monday July 6, 2009
On August 24-26, 2009, the National Institutes of Health (NIH) will be holding a State-of-the-Science conference on how family history can be used to improve health and health care in the United States. The conference is being held at the NIH Natcher Conference Center in Bethesda, Maryland. And if Maryland isn't on your summer vacation agenda, you don't need to worry: You can participate in the conference online.
What does this have to do with me?
The NIH organized this meeting specifically to help a wide range of people, from health care providers and researchers to interested citizens, better understand and utilize family health history to manage risk of a variety of diseases, including cancer. Many cases of cancer, including colon cancer, are considered sporadic, meaning they are not related to genetics or family history. However, up to 25% of colon cancer cases occur in people with a family history of the disease or who have a known "cancer gene".
In these situations, the lack of a standardized way for health care providers to collect, and for patients to provide, a family health history, can contribute to people being diagnosed later, when disease is more advanced and harder to treat. This is where the NIH State-of-the-Science conference steps in, to fill in the gaps and to improve health care delivery. If you have a family history of colon cancer, or any other disease, or even if you're just interested in this topic, be sure to take advantage of this free, open-to-the-public conference, either in person, or through the internet.