Sometimes you just need a little pampering

Staying in survival mode can be exhausting and sometimes you just want a little pampering. 

On June 7th there are a number of places that participate in Beauty and Support Day. Check this link out from Imerman Angels. Take care of you and relax, God Bless! 

http://imermanangels.org/2016/05/26/cancer-survivors-enjoy-day-pampering/

Physical wellness during this journey

I used to be such a gym rat and I lost a substantial amount a weight before. I am so used to strength training and high intensity cardio, which some were fun such as Zumba, advanced step aerobics, and kickboxing. Cardio machines are just not my thing, it will not hold my attention longer than 10 minutes. Let's fast forward to now, my body has gone through a lot of trauma and changes. Exercising isn't as easy as it was for me. I am used to missing the gym for a week or two and just jump right back in there, in reality...I can't do that now. I can't do some of the things that I used to do. I have to be conscious of my bone density, although myeloma is a blood cancer, remember that it affect the bones as well. I know now I have a few bone lesions and I do what I can to be careful because I don't want any broken bones. I have never had one and really don't want one. These days I am always tired/fatigued. It is important to exercise during and after cancer treatment.

So, how do we do that now with all these changes. First check with your doctor of course. If you have a history of weight training and have bone issues now due to cancer, it will be in your best interest to decrease the amount of weight that you are used to lifting. Avoid a lot of jumping and running. These are all things that I am used to so it is frustrating not to be able to do them. I get bored very quickly, so for me it is important to keep things fresh and new. I now that I can't just jump back in and do the things I used to do but I often want to do that. However, my mind and then sometimes my body will remind me that is not such a good idea.

Here are some tips from this website https://integrativeoncology-essentials.com/2013/07/how-to-begin-an-exercise-routine-for-cancer-patients-and-survivors-part-i/. I admit for me it will be hard for me to follow some of those especially "start of slow", something I have a problem doing. I am a very all or nothing person when it comes to exercise, if I can't do what I want to do I don't want to do it. However, I do know that it is very important to stay active.

Depression...don't let it win!

If a person has a never had a history of clinical depression or have close people to them that suffer with it, most people will end up dealing with some sort of depression after diagnosed with cancer. However, what is depression, some people confuse depression and sadness and they are totally different. People often say "I'm depressed and what they mean they are really sad".Clinical depression caused distress and impairs functioning. You can you also help to raise your serotonin levels as well. Being my career background was psychology, let's look at signs of clinical depression:

Ongoing sadness, hopelessness
Lost of interest in activities
Weight loss (without trying) or weight gain
Restless or agitated that is obvious to others
Loss of energy or often tired (fatigue)
Trouble sleeping (insomnia, waking too early, or not able to sleep)
Trouble focusing, making decisions, remembering
Feeling guilty, worthlessness, helplessness
Suicidal thoughts, plans, or attempts

A person must meet at least 5 of these criteria for up to 2 weeks or more in order to be diagnosed with clinical depression and they need to seek help. The signs are often exacerbated by dealing with the journey of cancer...dealing with chemo, radiation, transplants, surgeries, and life time medication therapy. You may not see your quality of life the same anymore, you may not feel that you can talk to anyone in your family or friends as they mostly can empathize but not sympathize with you. Understand that clinical depression can be treated through medication or therapy or a combination of both. You never want to suppress these feelings.

Serotonin may be decreased by chemotherapy drugs. However, there are things that you can do to help increase your serotonin such as exercise...Look at the chart below.

AND REMEMBER 

AND 

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Chemobrain & me...my journey

Chemotherapy can help you beat cancer, but side effects are almost certain. It’s common for you to have a cloudy mind, called "chemo brain," during and after treatment. Maybe you have a hard time remembering names or can’t multitask as well as you used to.

As many as 3 out of 4 people with cancer say they're not as mentally sharp. It’s often caused by y
our chemotherapy medicines, but it can also come from the cancer itself or other problems like infection, low blood counts, fatigue, sleep problems, or stress.

So when I mention experiencing chemo brain to people, some may be genuinely concern, some may notice there have been changes in my cognitive/memory abilities based on how long they have known me, or some people may just laugh thinking it is a joke or think I am just making it up. It isn't fun talking and during mid-sentence you completely forget what you are saying. It makes you feel as though all of those years of school and money on grad school are worthless, at times you just feel dumb having to have something repeated to you over and over because you forget or stare at directions and questions for a long time because your processing speed has decline. I have and continue to go through this. Just to name a few. 

A person with chemo brain may experience the following symptoms: 

• Concentrating and paying attention
• Remembering names, dates, and everyday things
• Finding the right word or doing simple math (like balancing your checkbook)
• Doing more than one thing at a time
• Mood swings

If you are concerned and wonder how chemotherapy has affected your brain, see if you can find a survivorship program as they may provide testing. If that doesn't work you may want to try to contact a neuropsychologist that can do testing. If you are on disability, make contact with your Department of Rehabilitative Services and obtain a counselor. They may be able to set up a neuropsych test with a psychologist for free if you are on disability. It is always nice to know where you were and where you are. This way you can get recommendations on how to strengthen the skills that may have diminished. 

I knew something wasn't right, I knew my reaction time, memory, and other things were not on the same level before I started chemotherapy. So, I would play this game called Brain Wars to help with my mental agility. For a long time I wanted to get tested and luckily I was able to receive testing for free. Although I had flashbacks of grad school, I had to take some of the tests that I had to learn about and hated it then and now...I don't know if it is worse to take it or give it. However, I made it through the 5 hour test, and it confirmed what I knew. My IQ used to be within the superior range prior to chemotherapy, and I have suffered a severe drop in my cognitive functioning and now my IQ falls within normal range. However, recommendations have been given to me in order to help increase it among other recommendations in other areas of my life. Unfortunately, a side effect of Revlimid, my long term therapy maintenance medication, is cognitive issues. 

 So, I encourage you all that think you may suffer from chemo brain, find a way to get a neuropsych test. Understand psychological testing can take anywhere up to 8hrs depending on the tests being used. Don't be embarrassed, remember chemo brain is real! You’re not just imagining this. Studies show that cancer and its treatment causes changes in the brain. What you’re going through is normal.Don’t be afraid to ask your family and friends for support and gentle reminders. Use your electronic device for reminders or just an old fashioned calendar. Support groups are another great idea.

Chemobrain...how to deal with it?!

Do you ever catch yourself talking and halfway through you completely forget what you were talking about? Do you have harder times searching for the word you wanted to use? Don't worry you aren't going crazy, you may suffer from chemobrain. Here is an article on how to manage chemobrain.

http://www.slideshare.net/DanaFarber/tips-for-managing-chemobrain

Expensive co-pays...this is nothing new, smh!

It is no secret that it cost more to treat than cure cancer. People that don't suffer from cancer personally don't understand the cost that comes attached to it. Your last round of chemotherapy or even radiation therapy may not mean taking medication is over. For example, I have to take a maintenance therapy medication, hopefully for only two years. However, that is the choice of the oncologist it may be 2 years, 3 years, or indefinite. I know for a fact that my medication costs $10,000 a month, but thankfully I found an organization that will cover the remaining cost that my insurance will not cover. These services if income based as well so some people aren't this blessed but those of us who find these services can get cut at any minute if the organization gets cut. There is a link attached below that gives details of experiences. America needs to do better to help people to avoid medical debt situation. Why is it that there are several countries that are able to not only offer FREE college tuition but they are able to offer FREE healthcare.

https://blog.stupidcancer.org/name-brand-drug-costs-are-too-high-and-generics-are-growing-out-of-reach-37679e893202#.6hzm4q23s

Faith is necessary...

Faith is necessary in any fight! With God in your life nothing is impossible! The days you feel physically ill, mentally exhausted, or just a plain failure because you didn't imagine your life to be like this lift your head and look above and call on God to help you through! Thank him in advance for deliverance!

                                                                    




                                                             

What your friends with cancer want you to know (but are afraid to say)

People with cancer are supposed to be heroic.

We fight a disease that terrifies everyone.

We are strong because we endure treatments that can feel worse than the actual malignancies.

We are brave because our lab tests come back with news we don’t want to hear.

 The reality of life with cancer is very different from the image we try to portray.

Our fight is simply a willingness to go through treatment because, frankly, the alternative sucks. Strength? We endure pain and sickness for the chance to feel normal down the road.  Brave? We build up an emotional tolerance and acceptance of things we can’t change. Faith kicks in to take care of the rest.

The truth is that if someone you love has cancer, they probably won’t be completely open about what they’re going through because they’re trying so hard to be strong.

For you.

However, if they could be truly honest and vulnerable, they would tell you:

1. Don’t wait on me to call you if I need anything.  Please call me every once in a while and set up a date and time to come over. I know you told me to call if I ever needed anything, but it’s weird asking others to spend time with me or help me with stuff I used to be able to do on my own. It makes me feel weak and needy, and I’m also afraid you’ll say “no.”

2. Let me experience real emotions. Even though cancer and its treatments can sometimes influence my outlook, I still have normal moods and feelings in response to life events. If I’m angry or upset, accept that something made me mad and don’t write it off as the disease. I need to experience and express real emotions and not have them minimized or brushed off.

3. Ask me “what’s up” rather than “how do you feel.” Let’s talk about life and what’s been happening rather than focusing on my illness.

4. Forgive me.  There will be times when the illness and its treatment make me “not myself.” I may be forgetful, abrupt or hurtful. None of this is deliberate. Please don’t take it personally, and please forgive me.

5. Just listen. I’m doing my very best to be brave and strong, but I have moments when I need to fall apart. Just listen and don’t offer solutions. A good cry releases a lot of stress and pressure for me.

6. Take pictures of us. I may fuss about a photo, but a snapshot of us can help get me through tough times.  A photo is a reminder that someone thinks I’m important and worth remembering. Don’t let me say “I don’t want you to remember me like this” when treatment leaves me bald or scarred.  This is me, who I am RIGHT NOW. Embrace the now with me.

7. I need a little time alone.  A few points ago I was talking about how much I need to spend time with you, and now I’m telling you to go away.  I love you, but sometimes I need a little solitude. It gives me the chance to take off the brave face I’ve been wearing too long, and the silence can be soothing.

8. My family needs friends. Parenting is hard enough when your body is healthy; it becomes even more challenging when you’re managing a cancer diagnosis with the day-to-day needs of your family. My children, who aren’t mature enough to understand what I’m going through, still need to go to school, do homework, play sports, and hang out with friends. Car-pooling and play dates are sanity-savers for me. Take my kids. Please.

My spouse could also benefit from a little time with friends. Grab lunch or play a round of golf together. I take comfort in knowing you care about the people I love.

9. I want you to reduce your cancer risk. I don’t want you to go through this. While some cancers strike out of the blue, many can be prevented with just a few lifestyle changes – stop smoking, lose extra weight, protect your skin from sun damage, and watch what you eat. Please go see a doctor for regular check-ups and demand follow-up whenever pain, bleeding or unusual lumps show up. Many people can live long and fulfilling lives if this disease is discovered in its early stages. I want you to have a long and fulfilling life.

10. Take nothing for granted. Enjoy the life you have right now. Take time to jump in puddles, hug the kids, and feel the wind on your face. Marvel at this amazing world God created, and thank Him for bringing us together.

While we may not be thankful for my cancer, we need to be grateful for the physicians and treatments that give me the chance to fight this thing. And if there ever comes a time when the treatments no longer work, please know that I will always be grateful for having lived my life with you in it. I hope you feel the same about me.