living with and through leukemia

Posted by Jonathan on 5/26/2016 to Health

Living through Leukemia


Definition:

Leukemia is cancer of the blood cells. Most blood cells form in the bone marrow. In leukemia, cancerous blood cells form and crowd out the healthy blood cells in the bone marrow.

The type of leukemia depends on the type of blood cell that has become cancerous. For example, acute lymphoblastic leukemia is a cancer of the lymphoblasts (white blood cells that fight infection). White blood cells are the most common type of blood cell to become cancer. But red blood cells (cells that carry oxygen from the lungs to the rest of the body) and platelets (cells that clot the blood) may also become cancer.

Leukemia occurs most often in adults older than 55 years, and it is the most common cancer in children younger than 15 years.

Leukemia is either acute or chronic. Acute leukemia is a fast-growing cancer that usually gets worse quickly. Chronic leukemia is a slower-growing cancer that gets worse slowly over time. The treatment and prognosis for leukemia depend on the type of blood cell affected and whether the leukemia is acute or chronic. Chemotherapy is often used to treat leukemia.



The ghost Symptoms:

The symptoms of many serious diseases and cancers, is, unfortunately, not always as clear cut as one would think. Below, you will see ten (10) symptoms of leukemia , non of which seem to be anything dramatic and could be chalked up to a cold or flu symptoms, a back ache or a pulled muscle. For example.... Let me tell you about one of our Friends here at AJ's Wigs who we have known for 26 years:

She was a hard worker, never complained about aches and pains or having a cold or flu or anything that we , as humans get over our life time. One day, she came in and she said she had a flu she couldn't shake. Sure, we noticed that she had the sniffles, but after all, it was allergy season so we didn't worry about it. Until that is, she came in one day and she looked terrible. We noticed she looked pasty. We felt her forehead and she definitely had a fever. Bob felt her skin, pressed her skin and noticed that the pliability of her skin was not there indicating dehydration (even though she was a big liquid drinker). Now, her on going symptoms could have been, again as I stated above, chalked up to a cold or flu,or even the “change of life”(weight loss, night sweat's,joint pain)

We made her go to emergency room and when they drew her blood, her blood was “like mud” and after all was said and done, the next day, she was diagnosed with full blown Leukemia. This started a 4 year fight for her life. All just from simple cold and flu like symptoms. Symptoms which we all take for granted as part of our lives. Someday, Id like her to share her full story so that it could help others, but at this point, she is smart to just want to put it all behind her.

So, below you will find the top ten symptoms of Leukemia followed by living with Leukemia:


1. Fever and Chills

Many of the initial symptoms of leukemia are similar to flu-like illnesses. Most people are not usually alarmed over such things like generalized achiness, fever, and cold chills. However, if these symptoms do not go away in a reasonable amount of time—within a week or two—then you should make an appointment with a health care professional for further evaluation. In many chronic cases of leukemia, the initial warning signs are so common that even many physicians may not suspect cancer at first. Leukemia can affect all age groups and is oftentimes overlooked in otherwise healthy children and young adults.

2. Weight Loss

Just like many other types of cancer, leukemia is characterized by loss of appetite and excessive weight loss. It is abnormal to lose more than one to two pounds a week, especially without trying. Extreme weight loss that occurs rapidly is usually a sign of a serious disorder and should be further evaluated by a health care professional.

3. Frequent Urination

The human body does a great job of warding off bacterial and viral infections. We are constantly bombarded with things that could harm us, but our immune system is highly capable of eliminating many of these threats before we are even aware they exist. So when someone who has no major health issues suddenly presents with frequent or prolonged infections, it sends up a huge red flag that the lymphatic system is not doing its job. Leukemia drastically reduces the amount of functional white blood cells, which makes it virtually impossible for the body to prevent infection.

4. Night Sweats

Just as with lymphoma, patients with leukemia have difficulty regulating their body temperature. They switch back and forth from a fever and cold chills to excessive sweating. The extreme sweating seems to be the worst at night. Usually, the person’s clothing and sheets are completely saturated with sweat. In women over 40, this is sometimes mistaken for signs of menopause. While just one of these symptoms alone may not be concerning, if you are exhibiting multiple symptoms, particularly related to infection, fatigue, or bleeding, then you need to seek further medical evaluation.

5. Joint or Bone Pain

Continuous bone or joint pain that is not caused by injury may be a sign of leukemia. Leukemia begins in the bone marrow, which is found in your long bones. The cancerous blood cells form in the bone marrow and destroy the healthy blood cells. As the cancer progresses, you may notice that your bones become achier and your pain level increases.

6. Fatigue

Red blood cells distribute oxygen to all of the cells throughout the body. As the amount of healthy red blood cells is depleted, the body is not provided with the amount of oxygen it needs. This causes extreme fatigue and weakness. Anemia does not always signify a serious disorder such as leukemia; it could be caused by something as simple as a dietary deficiency of iron. Your doctor can help you discover the root cause so that it can be treated properly.

7. Abnormal Bruising

The body’s platelets are responsible for clotting the blood after an injury to prevent either excessive external or internal bleeding. Frequent bruising that seems to occur easily or for no apparent reason may signify that you have what is known as thrombocytopenia—a low platelet count. If the bruising is accompanied by other signs of a bleeding disorder, such as bleeding gums, blood in the stool or urine, or frequent, uncontrollable nosebleeds, then you need to seek immediate medical care. Not only is a low platelet count a symptom of a more serious problem, thrombocytopenia can also have very serious consequences of its own, including death if ignored.

8. Petechiae

Petechiae are tiny red spots that appear on the skin when capillaries—the smallest blood vessels—bleed out. This may happen for multiple reasons, but it typically occurs due to excessive straining or pressure, such as during prolonged bouts of uncontrollable crying or vomiting. Just like with the frequent bruising, unexplained petechiae can signify a low platelet count, which is indicative of an underlying blood disorder, including leukemia.

9. Abdominal Discomfort

The spleen is an organ located on the left side of your abdominal region; it is an important part of your lymphatic system. In some cases of leukemia, it may become swollen, causing abdominal pain. If the enlarged spleen is pressing on your stomach, it may also further decrease your appetite, making you feel full after only eating a small amount.


10. Headaches

In reaction to the lack of white blood cells, your body overcompensates and tries to produce more. This excess of white blood cells can obstruct the tiny blood vessels in the brain, which causes some people to have frequent headaches. This symptom is often overlooked, because headaches can have a multitude of causes, from stress to sinus pressure.



Signs Signs everywhere a Sign

Really look at the signs of leukemia carefully and you will see that almost all of them can be associated with almost anything, but when you put two or three of them together, say

  1. Headaches

  2. Fatigue

  3. Flu like symptoms

Then it is wise to seek an appointment with your Primary care doctor. Another example of this is a perfect one. My story and it goes something like this:

{ Last Thursday, I was getting ready for work. I let the dogs out to potty and walking through the kitchen, all of a sudden, my left arm curled up and I couldn't straighten it. The pain, which was debilitating, shot up through into my upper arm, then neck,into my jaw, then chest. I couldn't breath and my body was in full sweat mode . Even though it felt like it lasted hours, it only lasted a total of 2-3 minutes and as fast as it came on, it also left that fast. So, let's just take three of the symptoms..

  1. left arm pain,

  2. Sweat,

  3. Neck pain.

    You could associate these to the fact that I had just lifted our 15 year old 100lbs black lab up the stairs leading from the patio to the deck. Maybe I strained myself lifting him or pulled a muscle. But when you add the neck pain, chest pain, full body sweats and shallow breathing, you get... HEART ATTACK. Just to finish the story, I changed my shirt and went to work, did 9 colors/cut's in 5 hours. When I got home, I felt like a Mack truck had hit me and Bob rushed me to the hospital and low and behold, I had in fact had, a heart attack.}


I learned quickly to listen to my body and I encourage each and everyone of you to do the same thing. Being diagnosed with leukemia or cancer, or any other life altering diagnosis is an emotional roller coaster. You feel alone, scared, isolated,and overwhelmed by not only the information you get bombarded with, but overwhelmed by the fact that your lifestyle is about to change drastically. Questions such as.. Am I going to die? How long do I have? Will I get sick because of the treatment's? What about my family?.One of the hardest things you go through, is being a support to others, while trying to keep yourself and your life together. But deep down inside, you MUST learn to depend on others as well.

Step by step/ day by day.

After reading all the information, telling your family, and starting treatments and once everything settles down,you now face LIVING with a new life style. The biggest thing you must do, (I repeat) must do, is seek a support group. People who understand what your going through. Share your story, talk about it, and listen to others stories, is the utmost importance. Knowing that your not alone and isolated can make a huge difference in your healing journey. Your oncologist or Hospital social worker usually will provide you with a support group.

Everyone's journey is different. For some, their life changes completely. Some people find living with cancer to be the biggest challenge of their life. It changes everything from relationships to work, finances to daily routines. Cancer treatments can affect the way you look and feel and the way that your body works. Cancer also affects your emotions and your plans for the future. If you ask anyone what the biggest change was, they always say, that it was losing their hair. Not the fatigue, not the pain, but the emotion of losing their hair was the most traumatic.

No one can predict exactly how cancer will affect day-to-day life. While you can’t control the future, you can think about what changes may happen and how you would deal with them if they arise. But lets mention just a few things that one has to live with:

Changes to finances

Cancer can have a major impact on your finances. Most cancer treatment are covered by provincial health plans, but coverage may vary from province to province. Many non-medical costs may not be covered by provincial health plans or basic health insurance. You may have to spend money on:

  • Traveling to and from treatment or appointments

  • Some drugs

  • Child care

  • Home care

  • Nutritional or food supplements

  • Medical equipment or supplies

You may also need to take unpaid time away from work, which can also affect your income. If you don’t have disability or health benefits, or if you are self-employed or unemployed, the financial impact of cancer may be particularly hard for you and your family. You may have to use your savings or borrow money to pay for cancer care.

A good first step is to understand more about your health insurance and any options that you may have. There is financial aid for retired or low income families. There is even Websites that will create fundraisers for you, or even the popular .. Go fund me page's on Face Book. I think the one I would call first for financial aid, is the American Cancer Society, and here are some others:

The Cancer Financial Assistance Coalition (CFAC) is a group of national organizations that provide financial help to patients. CFAC provides a searchable database of financial resources.

CancerCare's financial assistance programs (800-813-4673) provide limited financial assistance for people affected by cancer.

The HealthWellFoundation (800-675-8416) is an independent, non-profit organization that helps insured patients with a chronic, life-altering disease afford their medications.

The Leukemia & Lymphoma Society's patient financial aid program (800-955-4572) provides limited financial assistance to patients diagnosed with a blood cancer (such as leukemia, lymphoma, or multiple myeloma) with significant financial need to help defray treatment-related expenses.

Changes to work

If you have cancer, it’s possible that the way you work will need to change. If you work outside the home, you may have to take time off or adjust your work schedule to allow for treatment, rest and recovery. If your work is running your household and taking care of your children, you may also need to change the way you do these jobs, by getting someone to help you.

It’s helpful to know what types of benefits you’re entitled to at work, even if you don’t plan to take time off. Your employer, human resources manager, personnel officer, union or employee association should be able to answer your questions. One thing We here, at AJ's Wigs encourage you to also know your rights of disabilities such as applying for SSI or SSDI. The following is just a short “Blurb” on the disability Act:

Americans with Disabilities Act (ADA)

The ADA prohibits discrimination on the basis of disability in employment, State and local government, public accommodations, commercial facilities, transportation, and telecommunications. It also applies to the United States Congress.
To be protected by the ADA, one must have a disability or have a relationship or association with an individual with a disability. An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. The ADA does not specifically name all of the impairments that are covered.

Taking time away from work

When you’re first diagnosed with cancer, you may wonder whether or not you should work during cancer treatment. Many factors will influence this decision, such as how much sick leave you have and whether you can afford to be away. Some people find it helpful to not have work to worry about during treatment and like to take some time after treatment to adjust and rethink what they really want to do with their life.

For some, taking time away from work may feel like a relief. But it can also be stressful, particularly if you have to live on less money.

Many people enjoy their jobs and it can be difficult to give them up. Giving up work for a period of time makes some people feel as though they are giving in to the cancer. If you feel this way, try to think of the time away from work as an opportunity to concentrate on your health.

It may be helpful to talk to your employer, human resources manager or employee association to find out what your options are.Some people will feel better to work or retain employment throughout treatment.


Self-esteem and body image

Cancer can change the way you look, temporarily or permanently. Some people gain or lose weight. Chemotherapy/Radiation/hormone therapy etc, can sometimes make your hair fall out. You may have had surgery to remove a part of your body, and you may have scars.

These changes, even if only you can see them, can affect self-esteem – or how you feel about yourself. For many people, self-esteem is very closely tied with body image, which is how you feel about your body. At times, you may feel unattractive and negative about your body. Even though the effects of treatment may not show on the outside, body changes can still be troubling because the “old body” is lost. These feelings can be difficult to cope with.

You may be afraid to go out and be with other people. You may worry about rejection or not want to be intimate with your partner. You may be feeling angry, upset or sad. The Biggest thing to remember here, is that you are beautiful inside and out to family and friends who love you and you have the right to do anything you feel you need to do for yourself, such as getting a wig, wearing make up, get a massage and be (not selfish) but self full.


Sexuality and cancer

(Please skip this section if this subject bother's you)

This is a huge subject and one I might tackle in another blog, but for now, Cancer and its treatment can affect your sexuality and sexual function. For men, it could be erectile dysfunction and in women, it could be desire. It can also affect your sexual partners and your relationships. For many people, sexuality is a personal subject that is hard to talk about openly, either with sexual partners or with health care professionals. But talking openly and honestly about sex offers you the best chance of coping with any sexual changes that cancer treatment brings.

Sexuality is a part of our everyday life, but it’s more than just the act of sex or reproduction. Sexuality includes our need for closeness, intimacy, caring and pleasure, as well as our sex drive, sexual identity and preferences.

You or your partner may even think that sex shouldn’t matter that much right now. It’s true that some people don’t think about sex while they fight cancer. But it’s important to note that sex and all the loving and caring that go with it can be life-affirming. We humans are animals with sexual urges, and it will be harder on your partner then you as many treatments all but destroy the sexual urge.

As you all know by now, Bob, Aj's Wigs owner and my life partner, fought Cancer for 6 years in a row (with another 7 years off and on), and many many times is was so hard for us because for Bob, he felt guilty that he could not provide me what a life partner usually wants to provide, and for me, going all those years was nearly impossible , but being old fashioned at the time, I maintained my fidelity because my love for him was more important.

Having cancer or its treatment can cause

  • Sickness or feeling sick

  • Tiredness (fatigue)

  • Irritability

  • Sadness or depression

  • Anxiety or tension

  • Pain

  • Bowel problems such as diarrhea

  • Bladder problems

  • Mouth problems

  • Breathing problems

  • Skin changes or scarring

  • Changes in your sex hormones

If you have any of these side effects or feelings, you may not feel like having sex. Some people say that they feel less attractive because of them. You may not have the energy to take as much interest in your clothes, hair or make up as you did before. If you’re the partner of someone in this situation, you may be very worried about your loved one seeming so low. This is understandable. But most people come out of this phase once their treatment is over, or their symptoms are better controlled.

Physical activity during cancer treatment

Many doctors now encourage people with cancer to be as active as possible during treatment and recovery. Being active can reduce stress or anxiety, improve your mood and self-esteem, boost your energy, stimulate your appetite, help you sleep and help you regain your strength during recovery. Exercise can also help you reduce side effects like nausea, fatigue and constipation.

Exercise also helps you maintain a healthy body weight, which has many benefits. People who are able to maintain a healthy body weight are better able to handle treatment and its side effects, and they often recover faster. Studies have also shown that gaining weight during and after treatment can raise the risk of cancer coming back.

How much physical activity you can do during cancer treatment often depends on your overall health and physical condition, how you cope with treatment and what side effects you may have. Some people – for example, someone who has had breast surgery – may be given particular exercises to follow as part of their recovery.

This I covered in a previous blog (see... Can I exercise during cancer treatments on our Website)

Spirituality

The definition of Spirituality refers to almost any kind of activity through which a person seeks meaning, especially a “search for the sacred”. It may refer to personal growth/blissful experience, or an encounter with ones own “Inner dimension”.


OK, now that we have the mechanical definition, spirituality means something different to everyone. To me, it is God, to someone else, it might be Buddha and some others, it might be mother nature. It is really a personal search for a “higher power”, to know that in this world, there is something bigger then yourself. I cannot stress enough that in all our years here at AJ's Wigs, those who have not searched out their higher power, become very lost in their cancer journey. They have nothing to Grab a hold of, no belief system and usually don't put positive energy into healing.

For me, as a Christian, the one and only true spirituality is the one that connects a human being to a loving father creator. , son and holy ghost(Father God, Son Jesus Christ and the holy spirit) whom he gift's to us the ability to understand the entire person of the trinity. Without the son, there can be no relationship to the father and without the holy spirit there cannot be understanding of his word. To Wicca, it is mother earth, respect of the environment, trees etc.

Yoga isn't apart of Christianity as we know it, but one women describes her healing during yoga, picturing Jesus washing or scooping all the cancer cells in her body and she is today, Cancer free. Prayer, Yoga, Meditation, chanting, nature are all methods used by people who have a belief system, so we, at AJ's Wigs encourage you to find that spirituality to bring you through

Please remember one thing, that Leukemia/Cancer is not a death sentence, rather a life sentence one must go through to be stronger then ever. It almost pushes you to live if your not the kind of person who gives up easily. You never know how strong you are until your forced to be strong.


Jonathan
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