Monday, September 30, 2013

"There's Always Tomorrow": A final thought on #BloodCancerAwarenessMonth

Wrapping up Blood Cancer Awareness Month with a huge thank you to Ashley Rodgers for her expert answers to reader/survivor FAQs about cancer's emotional roller coaster. (To see the whole Q&A series, click the #BloodCancerAwarenessMonth hash tag below.)

On a personal note: My daughter Jerusha, five years old in the photo here, went with me to many of my chemo treatments, including one on her sixth birthday. Today she is a fabulous 24-year-old freelance editor, and this summer, she donated bone marrow to a six-year-old child with leukemia through a national anonymous bone marrow registry. I can't begin to express how proud of her I am.

(For more information on how you can help someone with a life-threatening blood cancer, visit Be The Match.)

Of all the songs that spoke to me during the journey of my own cancer experience (and the continuing journey of survivorship) is this anthem from Gloria Estefan. The first time I heard it, I was weeping in the ladies room at my oncologist's office, and perhaps it sounds melodramatic, but by the end of the song, I had changed. I had let go of an old life that was not working for me and embraced a new life that has been ridiculously blessed. To this day, I can't hear it without crying.

For me, "Always Tomorrow" captures all the longing and regret I felt with my diagnosis, thinking how differently I would have lived had I known my life might end so soon. It also speaks to the hope and determination to go forward and the acceptance that remission doesn't mean everything is okay, and it definitely doesn't mean "back to normal."

Things will never be the same, the only one sure thing is change. Remission means you have this moment to start over again and steer that change with love.

Peace, love and joy to all my fellow survivors, along with the energy to embrace a beautiful tomorrow.







Saturday, September 28, 2013

Sunday Groove: Mike Tompkins' awesome a capella "Rolling in the Deep"

In case you were wondering how it feels to transition from traditional publishing to the plate-spinning, chainsaw-juggling, little red hen "I'll do it all myself" indie life... yeah. It's like this.

Thursday, September 26, 2013

#BloodCancerAwareness Q&A: "My ex has cancer. Why does our son act like it's my fault?"

Over the years, I've received thousands of emails about Bald in the Land of Big Hair, a memoir about my experience with non-Hodgkin's lymphoma. A cancer diagnosis brings a firestorm of questions, and as a survivor, I can sympathize, but I'm not an expert; many times I just don't have the answers. So this year during Blood Cancer Awareness Month, I've asked Ashley Rodgers (Masters in Rehabilitation and Mental Health Counseling), to respond to some FAQs about the emotional and psychological aspects of the cancer journey. 

Q: My teenage son is great with his dad (my ex-husband) who is going through chemo and radiation, but to me he is belligerent, disrespectful and uncooperative. Why is he acting like my ex's cancer is my fault?

Ashley says: I understand how you may feel frustrated and hurt by your son’s actions and attitude towards you right now. It is difficult for everyone to cope with a sick parent, especially when you are still a child. Ideally, your parents take care of you when you're young and support you throughout your lifetime, and when illness interrupts that path it can be terrifying.

Although it is hard not to take his behavior personally, but try to put yourself in his shoes and see things from his perspective. Perhaps his acting out is because he does not know what to expect from his father’s illness and treatment. An excellent way to help your son and alleviate the tension between the two of you is to bring him into the loop of what is going on with his father’s medical situation. Even if you and your ex-husband don’t talk frequently, it is important as parents to communicate on this subject for your son’s sake.

Comfort comes with understanding. Your son’s behavior will likely change if he is aware of what to expect. Sit down and talk with him about each of these areas related to his father’s health:

  • What is the diagnosis?
  • How they are going to treat it?
  • What does that treatment do to the patient?
  • What are the possible future outcomes as a result?

Prepare him for the good, the bad and the "wait and see."

Communication is everything. Teenagers are known for being stubborn, defiant and disrespectful. But if you counter that with compassion, patience and a readiness to answer questions, I am sure you will see a difference in your relationship with your son.

Here are some helpful tips on how to deal with a sick parent from a kid whose own father was sick.

We welcome your questions and comments.

*No part of this blog or the book Bald in the Land of Big Hair should be misconstrued as or substituted for medical advice.

Wednesday, September 25, 2013

#BloodCancerAwarenessMonth Q&A: "Is it crazy to think I deserve to find love before I die?"

Over the years, I've received thousands of emails about Bald in the Land of Big Hair, a memoir about my experience with non-Hodgkin's lymphoma. A cancer diagnosis brings a firestorm of questions, and as a survivor, I can sympathize, but I'm not an expert; many times I just don't have the answers. So this year during Blood Cancer Awareness Month, I've asked Ashley Rodgers (Masters in Rehabilitation and Mental Health Counseling), to respond to some FAQs about the emotional and psychological aspects of the cancer journey. 

Q: My wife and I have been pretty unhappy for most of our 15-year marriage but stayed together because of the kids. Now I have cancer, and I feel like I'm wasting what might be the last years of my life. Is it crazy to think I should try to find love before I die?

Ashley says: Your desire to have love in your life is not crazy. It is natural to want passion and connection with another person. You can choose to dissolve your current relationship and look for someone new or you can try to rekindle what was once there between you and your wife. Either one you choose is okay.

If you opt to leave your marriage: When moving on from a long relationship, there are some important things to consider when looking for new love.

Take a break after the divorce to find out who you are as an individual. When you are in a long-term relationship, even if you are no longer close, you have grown as a person with someone else. You have to separate from that and see what it is you want now that you are single.

Be choosy. Don’t just go for the person who is the exact opposite of your ex-wife just because of that fact. Maybe you do want the new person to be different, but it is okay to want that person to have some of the same qualities that attracted you to your ex-wife in the beginning.

Look everywhere for a new relationship, don’t limit your choices to the bar around the corner. You may have been out of the dating game for several years; people meet love interests everywhere now. You can find people at the bar, the grocery store, the library, or park. This is important because this could help you find someone with the same interests or hobbies as you.

Here are a few tips on dating after divorce.

If you want to rekindle your marriage instead of moving on with a divorce there are many tools you can use to light that passion.

Start by listening to your wife. What is she asking of you, what kind of interaction dos she want from you? Find out and try to incorporate those things into your daily lives. Maybe she wants to be complimented on how she looks, or thanked for the things she does at home or for your children. If she is not sharing those needs with you anymore, start asking. Show her you are interested in what she wants and needs.

Take a trip down good memory lane. Remember some of the things you both used to do when you first got together. Make an effort to recreate one of those dates. Or, if you have been listening and your wife wants to do something new, try that instead! It will show her that you are listening, you are interested and that you want to build your relationship with new experiences together. Just remember to take strides toward the goal of rekindling your relationship even when it gets difficult.

If it took 15 years to get to where you are now, it may take time to get to where you want to be. But keeping your wife in the loop of what your goal is and how you are feeling with greatly assist you in your efforts.

Here are some tips on rekindling your relationship.

We welcome your questions and comments.

*No part of this blog or the book Bald in the Land of Big Hair should be misconstrued as or substituted for medical advice.

Tuesday, September 24, 2013

#BloodCancerAwarenessMonth Q&A: "My spouse is AWOL since my cancer diagnosis. WTF?"

Over the years, I've received thousands of emails about Bald in the Land of Big Hair, a memoir about my experience with non-Hodgkin's lymphoma. A cancer diagnosis brings a firestorm of questions, and as a survivor, I can sympathize, but I'm not an expert; many times I just don't have the answers. So this year during Blood Cancer Awareness Month, I've asked Ashley Rodgers (Masters in Rehabilitation and Mental Health Counseling), to respond to some FAQs about the emotional and psychological aspects of the cancer journey. 

Q: My husband has been totally AWOL since my cancer diagnosis, working late, leaving early, eating dinner in front of the TV and barely speaking to me. WTF?

Ashley says: It can be very stressful and hurtful to become disconnected with your partner after such a major medical diagnosis. You are not alone in your experience. Many patients go through a similar shift in their relationships and the key to getting through it is communication.

A diagnosis such as cancer can mean big changes in a relationship physically and emotionally. Good open communication is called for to help both partners adjust. Perhaps your husband does not know how to react to the diagnosis. He could be distancing himself in preparation for the worst possible outcome that he may lose you to the cancer. It is important to share your fears and concerns with each other and use this as a way to come together in strength. It is okay to be scared, but the positive support of having each other helps your overall well being during treatment.

Here are some tips on facilitating those interactions to open the lines of communication:

Make a date. Recreate your first date; this is especially lighthearted if it was awkward or quirky. Or you can go out and do something that you both did early on in your relationship. Maybe it was a homemade picnic lunch in a nearby park, or going to a drive in movie, or dinner at a specific restaurant across town where you ordered for each other. Try to rekindle the giddy feelings of your relationship and remind each other of the connection you share.

Leave love notes. Slip a note in his wallet that says something sweet. Write a message on the mirror in lipstick for him to see when he s getting ready for work in the morning. Write a letter about how he made you feel when you got married and what he did that made you feel special; be specific. Hide these in plain sight for him to find and bring a smile to his face throughout the day.

Compliment them. Tell him when he does something you like or appreciate, even if it is something small like a smile in your direction when you play with your hair. Be specific so he knows what it is you want him to do. Reinforcement helps encourage behaviors you want to continue.

Involve them. Include him in your day-to-day life and in your updates and expectations through treatment. With knowledge comes understanding. Share your run in with an old coworker at the coffee shop, the ridiculous demands of the new girl at work, and how your feeling about your treatment and progress.

For more help on communicating with your partner check out this article and video testimony from Livestrong.

We welcome your questions and comments.

*No part of this blog or the book Bald in the Land of Big Hair should be misconstrued as or substituted for medical advice.

Sunday, September 22, 2013

Sunday Groove: Nancy Sinatra nutshells the publishing industry with "This Town"

Nancy Sinatra nutshells the publishing industry: "This town is a love you town and a shove you down and push you 'round town... This town is a use you town, and abuse you town until you're found town."


Thursday, September 19, 2013

#BloodCancerAwarenessMonth Q&A: "Anger management? I just want to punch somebody in the face."

Over the years, I've received thousands of emails about Bald in the Land of Big Hair, a memoir about my experience with non-Hodgkin's lymphoma. A cancer diagnosis brings a firestorm of questions, and as a survivor, I can sympathize, but I'm not an expert; many times I just don't have the answers. So this year during Blood Cancer Awareness Month, I've asked Ashley Rodgers (Masters in Rehabilitation and Mental Health Counseling), to respond to some FAQs about the emotional and psychological aspects of the cancer journey. 

Q: Every time someone comes up to me and says, "How ARE you?" or tells me what an inspiration I am, I just want to punch them in the face. It's not their fault, but it pisses me off. What am I supposed to do with all this anger?

Ashley says: Feeling anger towards friends and family is normal. From people who are currently undergoing treatment to people who have been in remission for years, they all go through a rollercoaster of emotions regarding their experience with cancer. Having the emotions is neither positive nor negative; it is how you cope with them that matter.

One option for coping with anger is to focus it into energy and motivation to do something active. For example, take up running, biking, dancing, or some other activity. This helps to relieve the tension and gives you an outlet that you can utilize again and again.

Another option is to use your anger as fuel for creativity. Try your hand at painting, restoring an old piece of furniture, or pottery. These tasks require your focus and attention to detail. They can distract the anger you feel and burn it up in mental focus. You can come out feeling less angry and have a work of art you can be proud of.

Or perhaps, a more internal medium is what you are looking for. In that case, journaling can be an excellent tool for coping with the anger you feel. It can be a daily effort or utilized only on occasion when the emotion seems over the top. Getting your thoughts and feelings out of your head and on to the paper can help lower its intensity but also help you to focus on what it is exactly and where it is coming from. Processing the emotion can help you understand its origin and what it means for you.

Communicating how you feel with your family and friends is an option, and an important one. These other options described above can help you independently manage the anger in a healthy way but preventing the build up from happening in the first place comes with sharing how you feel with your loved ones. It may be that they want you to know they care by discussing the topic of cancer specifically. You could tell them that you would prefer more of the day-to-day conversation and less reminders of cancer. This gives your loved ones choices on how to interact with you rather than simply being pushed away. Chances are they will choose to adjust their conversation topics in an effort to stay connected with you and be supportive.

The Mayo Clinic’s Nurse Educator, Sheryl M. Ness, R.N. has more on anger and cancer here.

We welcome your questions and comments.

*No part of this blog or the book Bald in the Land of Big Hair should be misconstrued as or substituted for medical advice.

Wednesday, September 18, 2013

#BloodCancerAwarenessMonth Q&A: "Is chemo brain a thing? And where the hell are my car keys?"

Over the years, I've received thousands of emails about Bald in the Land of Big Hair, a memoir about my experience with non-Hodgkin's lymphoma. A cancer diagnosis brings a firestorm of questions, and as a survivor, I can sympathize, but I'm not an expert; many times I just don't have the answers. So this year during Blood Cancer Awareness Month, I've asked Ashley Rodgers (Masters in Rehabilitation and Mental Health Counseling), to respond to some FAQs about the emotional and psychological aspects of the cancer journey. 

Q: Ever since chemo, I've been struggling with my memory and concentration. It's hard to read a book. I get lost on my way to the grocery store. Sometimes I can't even recite my own phone number! I've heard about "chemo brain" and post-traumatic issues, but my friends tell me it's just stress. What can I do to get my brain back?

Ashley says: The term “chemo brain” refers to mild cognitive impairment; this includes thought processing, concentration, multi-tasking, memory and other mental functions. It is a very real problem that people who have undergone cancer treatment experience. For some it only lasts for a short while, for others it can go on for years. There are several ways to cope with this issue on your own, with the help of your friends and family, and with your doctor(s).

On your own you can focus on healthy habits that support an active brain. Try to maintain a routine of a good night’s sleep, healthy foods including vegetables, and exercise. Your brain is part of your body, so creating a routine full of healthy habits can help give your brain the assistance it needs to combat the mental effects of the cancer treatment.

It can also be helpful to create a regular schedule. When your memory is affected it can be difficult to remember what you wanted to buy at the grocery store, that job interview next week, or the gifts your best friend wanted for his or her birthday this year. Utilize a daily planner, coordinate all your lists, appointments, and contact information all into one place. This is something you can take with you wherever you go and refer back to it whenever you need.

Sometimes chemo brain can make it difficult to multi-task and here is where your friends and family come in. Do not be afraid to ask for help. Your support system is there to support you. If you are trying to do too many things at once, ask someone to help take care of some of the things on your list for you. Take on things one at a time.

Whether these tips help manage the difficulties you are having or not, it is always a good idea to let your doctor(s) know what is happening. They may be able to adjust your treatment or their care relating to these symptoms. Often times, patients will wait to share this with their doctors until it has majorly impacted their day-to-day lives. Help prevent further complications in your everyday by taking action now.

For more information on anything and everything related to “Chemo Brain,” here's an article from the American Cancer Society.

We welcome your questions and comments.

*No part of this blog or the book Bald in the Land of Big Hair should be misconstrued as or substituted for medical advice.

Tuesday, September 17, 2013

#BloodCancerAwarenessMonth Q&A: "Do I really have to tell my date I've had cancer?"

Over the years, I've received thousands of emails about Bald in the Land of Big Hair, a memoir about my experience with non-Hodgkin's lymphoma. A cancer diagnosis brings a firestorm of questions, and as a survivor, I can sympathize, but I'm not an expert; many times I just don't have the answers. So this year during Blood Cancer Awareness Month, I've asked Ashley Rodgers (Masters in Rehabilitation and Mental Health Counseling), to respond to some FAQs about the emotional and psychological aspects of the cancer journey. 

Q: I'm 25 years old and just finished 18 months of chemo and radiation. My hair is super short, but I'm not bald. My energy is starting to come back, and I'm trying to get out into the dating world again. It feels dishonest to not mention this huge thing in my life, but any mention the cancer thing either hijacks the whole conversation or totally turns the person off. What's the best way to bring it up without making people uncomfortable?

Ashley says: Many young adults have experienced the same dilemma. Your 20’s are a time of transition without the added rollercoaster of having had cancer, and sometimes having a love interest to any degree can help give you strength and comfort. But how do you bring it up? When do you share that information? Are you ready for a life long commitment or do you want a distraction?

The most important question to address first is, are you ready for a relationship? You have to find out from within yourself what it is you want. Do you want someone fun to distract yourself for now? Or are you looking for the husband or wife that will live happily ever after with you in a house with a white picket fence? Wherever you fall on that relationship continuum is perfectly fine. Once you know what you want and are emotional ready to get out into the dating world, just bring your confidence and go get them!

So, you are out there looking for that special someone and now you want to know when to bring up the C-word. Most experts agree that you should bring this up relatively early on in the relationship so that your partner has the choice to stay or go, before either of you is too emotionally invested. I would suggest having a few dates under your belt first so they get to know you and build a foundation of what to expect from being with you as a person, before the news. That way they know whom they are giving up if they choose that cancer is too heavy a thing to deal with.

But, how do you bring it up in the first place? The best way that I have found is to come at it with confidence. Each individual finds his or her own specific words to say but when you are sure about yourself and the subject, it can be less scary for you and the person you are sharing the information with. Otherwise, people can typically see the uncertainty on your face or hear it in your voice and that can fuel their fear. Just own who you are and the cancer that you have dealt with, and when you feel comfortable, most times others around you do, too.

The Huffington Post was interested in the same topic. Here is an article on the subject along with video testimony from other young adults in the same situation.

We welcome your questions and comments.

*No part of this blog or the book Bald in the Land of Big Hair should be misconstrued as or substituted for medical advice.

Monday, September 16, 2013

Enjoy a moment of pure storytelling pleasure!

I'm up to my neck in a ghostwriting project right now, but fresh reviews are forthcoming. Meanwhile, enjoy this amazing moment of pure storytelling.


Check out the Focus on Lymphoma app from @Lymphoma Research Foundation

#BloodCancerAwarenessMonth Q&A: "Chemo's over! Why do I freak out about follow up scans?"

Over the years, I've received thousands of emails about Bald in the Land of Big Hair, a memoir about my experience with non-Hodgkin's lymphoma. A cancer diagnosis brings a firestorm of questions, and as a survivor, I can sympathize, but I'm not an expert; many times I just don't have the answers. So this year during Blood Cancer Awareness Month, I've asked Ashley Rodgers (Masters in Rehabilitation and Mental Health Counseling), to respond to some FAQs about the emotional and psychological aspects of the cancer journey. 

Q: I've been in remission for several years, and I go once-a-year for scans and follow-up with the oncologist. I used to feel a lot of panic and dread as the six-month check ups approached. Now I feel terrified about going so long between scans. What's wrong with me?

Ashley says: I understand you may be concerned and confused about why going so long between check-ups can feel so scary. Remission is supposed to be this glorious time of relief and calm after the stress of the disease is gone, right? What you are feeling is completely normal—you are anticipating the worst; that the disease is back. Take a deep breath and understand that this fear is within your control. Here are some relaxation techniques to help you prepare for your doctor appointments and cope with the downtime in between:

Deep Breathing. Find a quiet space. Sitting with good upright posture, close your eyes and focus on your breathing. Gently place your hand on your stomach and inhale slowly. Hold the air for a moment then exhale slowly, letting all of the air out. Do this three to five times while focusing on the sound of your breath (Stop if you feel light headed or dizzy).

Yoga/Meditation. Yoga and meditation help connect your mind and body. You can participate in a class or do this on your own. The purpose is to clear your mind and connect your breathing to the movement of your body. With each stretch or pose, your movements are timed with your breath as you inhale and exhale. Focus your attention on breathing smoothly and fully, emptying out your thoughts and emotions, and connecting, rather, with yourself.

Draw the emotion. This is a technique used to help control emotions such as fear or anger. Draw what you believe the fear looks like or could look like on a piece of paper. Put it all out on the page. Then, crumple it up into a tight ball, squeezing it, smashing it down between the palms of your hands. Then begin to tear it up, shred it into little bits and throw it into the trashcan. This gets the image of the emotion out of your head and onto the paper, which you can control. By tearing it apart and throwing it away you visually see yourself discarding the unwanted emotion.

If you need more help to effectively manage the fear you are experiencing you should contact your medical doctor and let he/she know what is going on. Additionally, a mental health professional could assist you in processing this fear and overcoming the underlying issue.

Visit the Mayo Clinic for 10 Relaxation Techniques that Zap Stress Fast.

We welcome your questions and comments.

*No part of this blog or the book Bald in the Land of Big Hair should be misconstrued as or substituted for medical advice.

Sunday, September 15, 2013

#BloodCancerAwarenessMonth Thank you to fabulous Alyssa and all my Relay for Life friends!

Had to post a huge hug and shout out to Alyssa Rood for her amazing gift of energy and love as a Relay for Life participant. (And to her mom Denine for sending me this photo).

Since its humble beginnings in 1985, Relay for Life has been raising funds for the American Cancer Society. Millions of dollars have been generated for research, support, awareness and education, and fabulous people like Alyssa have made it happen.

If you've been to a Relay for Life event, you know that the track is lined with luminaria, some in tribute, some in memoriam, every one a reminder that cancer only comes in the context of a human being. Those lights through the night, as participants keep walking, are a powerful symbol of the scientists and caregivers who keep striving for answers, striding toward a cure.

Thank you! As a survivor who has been lucky enough to see my children grow up, I can't begin to express my gratitude.

Visit the Relay for Life website to learn how you can get involved.

Saturday, September 14, 2013

#BloodCancerAwarenessMonth Q&A: "My family makes fun of my 'woo woo' alternative treatments. URG!"

Over the years, I've received thousands of emails about Bald in the Land of Big Hair, a memoir about my experience with non-Hodgkin's lymphoma. A cancer diagnosis brings a firestorm of questions, and as a survivor, I can sympathize, but I'm not an expert; many times I just don't have the answers. So this year during Blood Cancer Awareness Month, I've asked Ashley Rodgers (Masters in Rehabilitation and Mental Health Counseling), to respond to some FAQs about the emotional and psychological aspects of the cancer journey. 

Q: After a year of remission, my cancer is back. I want to investigate alternative and naturopathic treatments instead of more chemo and radiation. My family tells me I'm an idiot. They're constantly on my case to abandon this "stupid, suicidal" belief system. I really need their support right now. How do I get them on my side?

Ashley says: The news of your cancer returning can be scary, not only for you, but for your family as well. It seems to me that your family just wants you to be healthy; therefore they pressure you to take the most widely accepted route of medical treatment. This is significantly reinforced if that is what put the cancer in remission in the past. Chemotherapy can be difficult to endure as the patient and they may not understand your reasons why you would want to try an alternative form of treatment.

In order to “get them on your side,” I would suggest fully communicating to them your desire for an alternative treatment. Their fear likely stems from the possibility that the alternative methods will not be successful like the previous treatments. Help shed light on the methods you are looking into, the process you want to take, and your desire to be healthy, too.

In situations like this, I believe medical family therapy would be an ideal option to help facilitate the conversation and reinforce the support you are wanting from them. Medical Family Therapy can help you convey what your goals and feelings are to your family but can also include your doctor or naturopathic treatment provider in the conversation.

Medical family therapy is a counseling environment that includes the mental health counselor, you, your treatment provider and your family members. The counselor helps facilitate the conversation between all parties involved. This helps to get everyone on the same page and working toward the same goals. By doing so, the treatment plan typically runs more smoothly and the patient and family members feel more emotionally connected and supported.

The bottom line is in order to have your family support your medical treatment choices, and they are your choice to make, you need to share with them as much as you can. Tell them what option(s) you have chosen, what to expect from that treatment, and what you need from them to get through it all.

For a more detailed description of what Medical Family Therapy is and what you can expect, read more from Stages Family Therapy, LLC here: http://www.stagesfamilytherapy.com/stages-services/medical-family-therapy.

We welcome your questions and comments.

*No part of this blog or the book Bald in the Land of Big Hair should be misconstrued as or substituted for medical advice.

Friday, September 13, 2013

#BloodCancerAwarenessMonth Q&A: "I'm in remission! Why am I so depressed?"

Over the years, I've received thousands of emails about Bald in the Land of Big Hair, a memoir about my experience with non-Hodgkin's lymphoma. A cancer diagnosis brings a firestorm of questions, and as a survivor, I can sympathize, but I'm not an expert; many times I just don't have the answers. So this year during Blood Cancer Awareness Month, I've asked Ashley Rodgers (Masters in Rehabilitation and Mental Health Counseling), to respond to some FAQs about the emotional and psychological aspects of the cancer journey. 

Q: Everyone was amazed by my positive attitude during chemo. I worked hard to stay upbeat, and I thought everything would be fine once my remission was confirmed. Instead I feel depressed and more alone than I've ever felt in my life. Why can't I just get back to normal?

Ashley says:
I understand that you are feeling alone now and might be confused by that since remission is usually imagined with feelings of happiness and relief. But consider this, when you were in treatment, how many people did you work with regularly to stay on top of your health and the effectiveness of treatment? How often do you meet with those medical professionals and supportive connections now?

Often times, patients experience this depressed state after being told they are in remission because they no longer have to go into the hospital or clinic as often, check ups are more spaced out and contact with the doctors is just to see if you have maintained the status of your last visit. It is less intense, and therefore you feel neglected and alone. This is normal. Your social support network has changed dramatically, so you must now change with it and find your “new normal.” One way to do that is to focus on rebuilding your social support network. Here are some ways to do that:

Initiate conversation and interaction with your friends and family. They might not be as involved as they were while you were currently undergoing treatment, but that does not necessarily mean they do not want to still be involved now. They might be under the impression that now that you are “better” you do not need them as much. Reach out to them and reconnect. Let them know you still need their support as you move forward as a survivor.

Join a survivors support group. This could be group therapy or an activities group full of members that have gone through a similar experience. Both are helpful in different ways. Group therapy helps you process what you went through and are now experiencing with the added bonus of others in the room that are sharing the same stories. An activities group helps you make new connections with people who understand your situation personally, not just as an onlooker or caregiver. These could be friendships that last a lifetime.

Volunteer to give back. Find an organization that helps patients and survivors. Do for others. This helps you feel good about what you are doing because the organization you are helping will continue to help others beyond your ability. This connects to you because you are able to help propel that reach by donating your time and effort. You will be helping others that went through or are still going through what you experienced.

You may be feeling low now, but know that you just need to adjust to a new normal. Take control of what that new normal is by deciding who to reconnect with, where to volunteer, what group to join or whoever else you want to include in your new life.

For more on “getting back to normal” after remission, check out this article on the Baylor website: "I'm in Remission. Now What?"

We welcome your questions and comments.

*No part of this blog or the book Bald in the Land of Big Hair should be misconstrued as or substituted for medical advice.

Thursday, September 12, 2013

#BloodCancerAwarnessMonth Q&A: "What's with all this sex since my hubby's diagnosis?"

Over the years, I've received thousands of emails about Bald in the Land of Big Hair, a memoir about my experience with non-Hodgkin's lymphoma. A cancer diagnosis brings a firestorm of questions, and as a survivor, I can sympathize, but I'm not an expert; many times I just don't have the answers. So this year during Blood Cancer Awareness Month, I've asked Ashley Rodgers (Masters in Rehabilitation and Mental Health Counseling), to respond to some FAQs about the emotional and psychological aspects of the cancer journey. 

Q: Since my husband's cancer diagnosis we've been having sex at least once and sometimes two or three times a day. Is there something horribly wrong with us?

Ashley says: First and foremost, there is nothing wrong with the two of you. It is natural for your sex life and patterns of intimacy to change, especially during a major life event like being diagnosed with cancer. Sometimes couples find that their sexual interactions become less frequent and they rely more on emotional comfort and support from one another; others find that sexual activity brings them the strength and comfort they are looking for.

Specifically regarding your situation, is this frequency uncomfortable for you? Often times people will neglect their own feelings or needs in order to take care of the needs of their loved ones. This is a characteristic of the term co-dependency, which can often be considered a dirty word in society but it means that you care about fulfilling others’ needs before your own. It is important to recognize what your needs are and communicate them to your partner. That way you can come together as a couple with what works for you both equally.

As far as how much is too much or too little, right or wrong does not factor in here. What is right is how much is comfortable for you both as a couple. Communicate with each other and share what you need from your partner. Perhaps your magic combination is sex once a day, and lots of hugs and handholding, or maybe the Do Not Disturb sign never comes down. The idea is to have a happy, healthy sex life full of respect and communication.

For more from the American Cancer Society on how your sex life can be affected by cancer.

Joni says: That's such a sensible approach to a topic that can be kind of powder-keggy for a lot of people. Over the years, that part of the book has generated the most response from readers--both love and hate mail! Thanks for the wise words, Ashley.

We welcome your questions and comments.

*No part of this blog or the book Bald in the Land of Big Hair should be misconstrued as or substituted for medical advice.

Wednesday, September 11, 2013

#BloodCancerAwarenessMonth Q&A: Where did all my friends go?

Over the years, I've received thousands of emails about Bald in the Land of Big Hair, a memoir about my experience with non-Hodgkin's lymphoma. A cancer diagnosis brings a firestorm of questions, and as a survivor, I can sympathize, but I'm not an expert; many times I just don't have the answers. So this year during Blood Cancer Awareness Month, I've asked Ashley Rodgers (Masters in Rehabilitation and Mental Health Counseling), to respond to some FAQs about the emotional and psychological aspects of the cancer journey. 

Q: Since my cancer diagnosis, a lot of my friends and even some of my family members seem to have disappeared. If I happen to bump into someone I know, they're obviously uncomfortable. WTF?

Ashley says: Many people have experienced loved ones pull away during or after treatment. This is typically because they care about you and do not know how to handle the news regarding your diagnosis. Some people avoid situations of conflict or distress believing their concerns would just add to the heavy load they assume you must already be carrying.

Help shorten the distance by beginning to reconnect with them. Communication is key. Here are a few tips on reconnecting:

Start small. Plan to meet for coffee or dinner just to catch up. It does not have to be a serious sit down. Just relax and revisit your relationship with no pressure or expectations. This can be difficult, but is the best way to reconnect and rebuild your relationships.

Express how you feel. Use "I-statements" to share your feelings with your loved ones and what you expect from them. I-statements are structured like this: “I feel ____ when you _____. Instead I would like you to _____.” This puts your feelings out first and allows your friends to be more receptive of what you have to say, as opposed to the reverse, which puts how they affected you first. This can put your loved ones on the defense and furthers the distance in your relationship. Your I-statement could be as simple as, “I feel hurt when you pull away. Instead I would like you to spend time with me and we don’t have to bring up the C-word.”

Take it slow. Give your relationships time to build and strengthen. Savor each step to a closer relationship as a victory. Perhaps your loved one is not ready for dinner and a movie followed by a road trip across the country, but they are up for coffee at the local café next week. Meet them for coffee and work up to the road trip.

There are several ways to start the road to reconnecting, just pick your path. Be encouraged that others have felt the same way you do and with hope and patience have reconnected with their loved ones.

Here's a great article from Mayo Clinic on reconnecting with loved ones after treatment.

Joni says: This is so much healthier than what I did during chemo; I just sort of withdrew like a turtle and tried not to "bother" anyone. That didn't help my friends who really were hurting for me but didn't know what to say. And it certainly didn't help me. I felt horribly isolated and alone. Thanks, Ashley! Great advice.

We welcome your questions and comments.

*No part of this blog or the book Bald in the Land of Big Hair should be misconstrued as or substituted for medical advice.


Tuesday, September 10, 2013

#BloodCancerAwarenessMonth Q&A: "How and when do I share my cancer diagnosis with my family?"

Over the years, I've received thousands of emails about Bald in the Land of Big Hair, a memoir about my experience with non-Hodgkin's lymphoma. A cancer diagnosis brings a firestorm of questions, and as a survivor, I can sympathize, but I'm not an expert; many times I just don't have the answers. So this year during Blood Cancer Awareness Month, I've asked Ashley Rodgers (Masters in Rehabilitation and Mental Health Counseling), to respond to some FAQs about the emotional and psychological aspects of the cancer journey. 

Q: At what point am I obligated to share info about my cancer diagnosis with my extended family? 

Ashley says: When it comes to sharing your diagnosis with extended family and others in your social circle, the timing is up to you. Depending on the dynamic you have with each family member or friend, they may notice something is weighing on your mind and they may ask you for the information. Others might not notice and you might be feeling the urge to share in order to connect and gain encouragement. Social support is a great source of encouragement and strength especially when you have been diagnosed with cancer. Research shows that social support improves mental and physical well being. It allows you to learn and utilize more positive coping skills, which eases the level of stress comparatively.

It may be tough trying to start this conversation with your loved ones but here are a few tips on how to approach the topic:

Give your family member(s) a heads up that you want to meet and talk with them. Maybe you want to meet that afternoon, or a few days from now. Asking for the time to talk allows the family member to prepare to set aside the time and to also be aware that you have something you want to share with them. This gives them time to be available to receive what you have to say, rather than being in the middle of picking up kids from school or on a lunch break when they are rushing back to the office, etc.

Start by saying you have something important you want to share with them and let them know what the diagnosis is, and what that means. Sharing what to expect helps provide comfort in knowing. Fear and anxiety more often follow the unknown. Try to provide as much information as you can and if you do not have an answer to a question, tell them you will find out together. 

And finally, be available to answer questions and stay connected with them. Talk about what's working now and what could be better moving forward. Social interaction and support helps combat depression and keeps you going stronger than when you are on your own. If you are looking for more social connections to help you through this, look for a support group in your area. 

For more information, check out this article: The Impact of Social Support on Cancer.

We welcome your questions and comments.

*No part of this blog or the book Bald in the Land of Big Hair should be misconstrued as or substituted for medical advice.

Monday, September 09, 2013

#BloodCancerAwarenessMonth Q&A: "Is my child old enough to know Mommy has cancer?"

Over the years, I've received thousands of emails about Bald in the Land of Big Hair, a memoir about my experience with non-Hodgkin's lymphoma. A cancer diagnosis brings a firestorm of questions, and as a survivor, I can sympathize, but I'm not an expert; many times I just don't have the answers. So this year during Blood Cancer Awareness Month, I've asked Ashley Rodgers (Masters in Rehabilitation and Mental Health Counseling), to respond to some FAQs about the emotional and psychological aspects of the cancer journey. 

Q: At what age is a child old enough to be told that a parent has cancer?

Ashley says: Cancer can be a scary word, even for adults, but communication in relationships is necessary at any age. Children generally know when something is going on, even when they do not know specifically. It is better to communicate what is happening, otherwise children typically will blame themselves for the tension. The key is to talk with your child in a way that is age appropriate.

Young children who have never experienced sickness or loss might not understand the depth of the concept. In this case, it is best to start the conversation in general and abstract ways. Talk about how you are feeling and what it means for your child. For example, perhaps treatments are resulting in lack of energy, irritability, or memory loss. Explain that sometimes when you are not feeling well, these things happen but that it is because of your medicine and not because they did something wrong or that you are not interested. This will help them understand in a way and not lay blame on themselves.

Older children have cognitively developed further and are able to understand what cancer is and how it can be scary. But with knowledge and understanding, comes comfort in knowing what to expect. Older children and adolescents want to be treated with respect and they know when something is being kept from them. Instead of reinforcing rebellion by protecting them from the news, invite closeness with conversation. Tell them what is happening to you, and what the options are down the road through treatment and further. Allow them to receive and process the information. Be available for them and ready for their questions. If you do not know the answers, tell them you will find out together.

When it comes down to it, any age is old enough. Just talk with them. No one knows your children better than you do. You know what they can handle and in what amount.

For more resources on how to talk to your kids check out: Straight Talk to Kids on the NYU Cancer Institute website.

We welcome your questions and comments.

*No part of this blog or the book Bald in the Land of Big Hair should be misconstrued as or substituted for medical advice.

Saturday, September 07, 2013

Sunday, September 01, 2013

Wonder Wendy: "You must be radiantly, buoyantly alive!" (Thanks, chemo!) #BloodCancerAwarenessMonth

I'm so in agreement with Vivid Wendy Barrie! Alive is SO much better than non-alive! That's why I'm grateful to all those who stepped up to participate in clinical trials, donate blood and marrow, or dedicate their lives to caregiving in an effort to give life to all of us with blood cancer.

September is Blood Cancer Awareness Month! Visit the Leukemia & Lymphoma Society to learn more about the amazing research and progress toward a cure.

(Click to enlarge image.)

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