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.

Stem Cell Transplant PT. 1, what's that?

Some people may have questions and want to understand what is a stem cell transplant. A blood and marrow stem cell transplant is common for people with blood cancers.  First of all what is a stem cell transplant (sct)? It is a procedure that can restore marrow function for patients who have had severe marrow injury or abnormalities of the immune system. Stem cell transplantation has replaced bone marrow transplantation. There are two kinds of sct, autologous  and allogenic.

I received an autologous (in the blood cancer world, auto for short) transplant. This is when the patients own stem cells are used. The stem cells are collected after taken a medication called neupogen (well that was at least my medication) that you can administer to yourself. This will increase your white blood cell count and I will not sugar coat anything, that process wasn't fun at all. With the WBC increasing there will be some pain and it is very hard to walk but it is temporary. You can stop taking the medication once enough cells are collected. That can vary from person to person. Thankfully I collected all I needed and more in one take. However, some people are not as lucky...it may take them a few days, a week, and I believe my sct doctor told me that someone even took one month to collect all they needed. After they are collected the cells are frozen. After one intensive round of high dose chemo...this is when you will lose your hair, the cells are thawed and you receive them through an infusion. You heard right...you do not have to be cut open. People always assume that when they hear the word transplant.  During the infusion you may feel a tickle in your throat that will make you cough. There is a higher risk of disease relapse.

An allogenic (allo) involves receiving stem cells from a donor. If a person has siblings they are the ideal candidate to be a match but the donor can also be unrelated. Allogenic transplants can be a long term cure for a patient's disease but there is no guarantee. They have to screen the person for compatibility. I know of a lady that had two allo's because she relapsed a few months after her first one which her twin was her donor. Then she seemed to have done better with another sibling who a donor the second time. People that receive allo will also receive high dose chemo before their transplant.

Transplants are used so doctors can give larger doses of chemo and/or radiation to increase the chance of eliminating the disease in the marrow and restoring normal blood cell production. Receiving a transplant is based on a number of things such as a patient's age, general health, medical condition, the likelihood that the disease will respond, the availability of  a donor or the use of the patient's own cells.

This is a lengthy topic and I will do a part 2 to talk about which blood cancers will most likely respond to a transplant.

Remember to have this conversation with your doctor do decide the best choice for you.  This is not an easy journey but the more negative you are the quicker you will deteriorate. The devil wants to keep you down, don't allow him to win. You keep fighting with courage, strength, and the best FAITH!

A brighter day!

The last few posts have been educational so I decided to do some inspiration today. We all experience bad days but don't allow the bad days to consume you. People think that all your problems disappear because you may not get chemo infusions anymore and there is no sense is arguing with people and stressing yourself out for those that don't want to understand what you deal with. The things you deal with may even pull you in a dark place. Shake the devil off because he wants to keep you in that place and have your health to deteriorate even faster. If that happens you then you are allowing him to win. Let him that for every dark night there is a brighter day and he cannot have you!  Always look to God and pray; even when you find yourself in a place where you can't pray or know what to say just call on the name of Jesus out loud! Be blessed and keep your head up!

What in the world...Menopause before 40?!

People always ask me if I want children, I let them know adoption is and has always on option before this happened, but let them know biologically I can't have children because I am post menopausal. They always say, "Oh, my you are too young for that." Although this is true it sure isn't or wasn't in my control. Due to how much percentage of Myeloma cells I had when diagnosed, aggressive steps had to be taken fast! Unfortunately, there was time to talk about fertility and freezing eggs. Unfortunately,  this happens to many women, young women that go through chemotherapy. I am not saying that this will happen to every single young woman that is diagnosed with cancer will encounter chemo induced menopause, whether it is pre-menopause or post-menopause.

Natural menopause typically happens between the ages of 45-55 for women. This is when in most women's lives menstrual periods stop permanently, and the woman is no longer able to have children. Medical professionals often define menopause as having occurred when a woman has not had any vaginal bleeding for a year.It may also be defined by a decrease in hormone production by the ovaries. Premature menopause can be the result of genetics, autoimmune disorders, or medical procedures. "Induced" menopause happens when the ovaries are surgically removed for medical reasons, such as uterine cancer or endometriosis. Induced menopause can also result from damage to the ovaries caused by radiation or chemotherapy.

Most women approaching menopause will have hot flashes, a sudden feeling of warmth that spreads over the upper body, often with blushing and some sweating.. The severity of hot flashes varies from mild in most women to severe in others. I will tell you for someone that used to be cold all the time, those hot flashes are no joke! One minute I was hot turning the A/C on in the winter and then the 10 minutes I was turning the temperature back up!

Other common symptoms around the time of menopause include:

• Weight gain
• Irregular or skipped periods
• Insomnia
• Energy loss
• Lack of motivation
• Aggressiveness
• Difficulty concentrating
• Anxiety
• Tension
• Nervous exhaustion
• Mood swings
• Fatigue
• Depression
• Irritability
• Racing heart
• Headaches
• Joint and muscle aches and pains
• Changes in libido (sex drive)
• Vaginal dryness
• Bladder control problems

These issues can be difficult to deal with, so it is important to talk about those things with your doctor. However, if you are dealing with deeper issues that is beyond your doctor's expertise please consider going to therapy . Even you are still not working you can find a non-profit organization or any organization that functions on a sliding scale and you may not have to pay anything. Please don't deal with this by yourself. If you are a young woman 20-30s and this has happened to you, your family may not understand, you can't talk to your friends because they don't understand. Unless you find a group that has gone through similar things, but again sometimes you may be dealing with heavy stuff only a therapist can help with. You can't talk to older women who have gone through menopause because again they don't understand if they went through normal menopause.  Doctors will say that some young women bodies will bounce back from it but I don't know how much I believe that; however, I will leave that to the Lord if mine will or not. Continue to stay lifted, positive, and keep yourself engaged in activities that bring you joy, have an accountability partner to make sure you get out...whatever it takes, life isn't a bed of roses but enjoy your life as much as you can!