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Blood Cancer Survivor of the Month (March): Madelon's Story

I was born (1957) with severe asthma and allergies. I had part of my right lung removed when I was 19. There were not as many drugs on the market then. I was blessed as I got married and had two children. I tell people that get a cold or flu now and that is how I felt most of my life. I was able to finally complete school and I became a respiratory therapist. When I first started my career as a RT my patients were cystic fibrosis patients. I couldn't imagine knowing you had a disease that was terminal. I had a respiratory arrest and the physicians thought that I was brain dead. Almost two years to the day it happened again. Around 2000 many more drugs were on the market and lots of prayer my symptoms drastically improved. Now this is where the big sipped bumps come into play. In 2002, I was still getting infection after infection but was able to work etc. Routine blood work showed anemia which my primary care physician could not identify . She referred me to a hematologist/oncologist which diganosed me with Monoclonal gammopathy of underdetermined significance (MGUS), which is a paraprotein found in the blood and it resembles Multiple Myeloma. My m-spike at that time was like 1. It was monitored every 3 months for about 5 years . The number increased slightly but not by much so my a ppts were moved to every 6 mo. I had a couple of bm bx during this period. M-spike increased to 1.6 around 2008 . So more BMB and bone survey. Moved check ups back to every 3 months. During this time I was stared on iVIG for the infections. Feeling tired and run down from work, home life and I play organ at our church. In Feb of 2010 my M-spike jumped to almost 5. That is when I got the dreaded news. It was all like a dream or should I say nightmare. I was stared on velcade and steroids. Well steroids had already been in my life steadily because of my past history. The plan was to bring the m-spike down to 0 and get SCT. Well the dosage of velcade was making my fingertips and toes turn blue so it was decreased. This caused the numbers not to decrease as rapidly as my transplant physician wanted. They tried adding revlimid. Still the M-spike was being stubborn. My docs decided to hit me hard with a combination of chemo in which I was constantly hooked up to this back pack for a week. I had four rounds of this and this is when THE HAIR FELL OUT!. I was admitted the first week of nov 2010 for my line for the transplant and was given more intense chemo. Went home for 2 weeks and then I was admitted for the big day and my dose of melphalan. I received my SCT Nov 24,2010. By the way ,the harvesting of my cells went well. They were able to harvest enough for two SCT if needed. So to speed the story up , m-spike was .6 and fell to .3. First BMB post SCT was 10% . Second BMB showed 35% and her we go again. I begged my transplant physician to do another one. He told me I had to wait either 2or3 wks. He had began processing paper work for another transplant. I am an only child so he began looking for a donor. So, when he repeated the BMB ,it was back down to 10%. In the meantime they did find a match for me. We had lots of meetings with both docs and decided to watch and wait. Everything seemed to be holding steady with my partial remission until Feb 2012. My m-spike increased form .3 to 1.5. Again here we go working up for the allo. I was placed on Revlimid 10mg and pred 40mg M,W,F. I felt better than I had felt in a long time, so the decision was made again to watch and wait while being on the maintenance drugs. The steroids make you crazy!!! With side effects so they have been lowered to 10mg. I have had 2 bone surveys and 2 pet scans and I have no tumors or lesions. I still receive IVIG every 4 wks and I am almost due for my pet scan etc. Docs say I look really good and they can't explain it even with the numbers being slightly elevated so they really don't want to put me through all that at this time. My quality of life is good for now. One of my maintenance meds also include cyclophosphamide 50 mg daily.

Yes there are days of fatigue and slight nausea along with neuropathy which seems to be my biggest issue right now. I know that God is keeping me and this really has made me learn how to lean totally on him. I have to take each day at a time. Every time I wake up I thank God and try to live that day to its fullest as though it was my last! WAITING!! And Living!


#KEEPPUSHING MADELON! Thank you for sharing. May God continue to bless you on this journey and in your life!

Take care of you!

What can you do to take care of you when you going through any Cancer treatment? Yes,chemotherapy, radiation, stem cell transplant can cause all kinds of side effects especially fatigue, nausea and vomiting. Just know there are days that will be better than others. When you have those good days take advantage of them. These treatments and diseases wreck havoc on our bodies but try to do what you can to make it stronger.

It is recommended that after surgery or other phases of treatment one should engage in 180 minutes of moderate exercise a week. In addition, add strength training 3 times a week. for those that have to be careful with your bones lessen your weights or use resistance bands. You can also engage in water aerobics. DON'T forget to stretch!

Are there other options? Yes there are. Integrative medicine which focuses on the whole person from a physical, emotional, spiritual, and mental perspective. These alternatives include mind body techniques, manipulative & body techniques, and energy therapies.

Mind body techniques: art therapy, meditation, hypnosis, and Tai chi. These alternatives help with mood, nausea, vomiting, pain, and knowledge.

Manipulative & body techniques: massage therapy, healing touch, reflexology, and qigong.

Energy therapies: healing touch, cranialsacral therapy, and acupunture. Before you engage in any of these intergrative therapies medicines please consult your physician! At least 38-60% of people are using these techniques without telling their doctor.

Lastly, diet and nutrition are important. You should be eating meals made up of whole and fresh fruits and vegetables, high  in fiber, high in omega-3 and try to decrease your intake of animal products. Regarding omega-3, it is best to eat fish rather than using flax seed.

Remember to take care of you and stay prayed up! It is known that a spiritual connection give a person a greater quality of life going through Cancer treatment! #Stayencouraged

Why is this important?

Some may want to know why increasing the awareness of blood cancers is important to me. Well because I have Multiple Myeloma. Understand that every 4 minutes someone is diagnosed with a blood cancer and every 10 minutes someone dies from a blood cancer. Nothing can get done if we all just sit down and be quiet. Well who is we? We- those that are diagnosed with any blood cancer, those who have a family member diagnosed with any blood cancer, or those who may have a friend that has a blood cancer. With the limited funding and no preventative tests for blood cancers, by the time a person goes to the doctor with symptoms they have Cancer.

These blood cancers could be Multiple Myeloma, Hodgkins-Lymphoma, Non-Hodgkins Lymphoma, Chronic Myeloid Leukemia (CML), Myelodysplastic Syndrome (MDS), Chronic Lymphocytic Leukemia (CLL), and Acute Myeloid Leukemia (AML)

For your healing or your loved one: According to information that I gathered at the 9^th Annual LLS Blood Cancer Conference it has been noted that a person with Cancer is known to do better if they have any type of spiritual connection. 

A prayer

A pastor recently diagnosed with Multiple Myeloma wrote this prayer: 

"Strong and Tender God, you are the source of all wholeness. Fill my heart with trust in your love, my mind with thoughts of your goodness, my spirit with hope, and my heart with joy. Give me courage to face pain, strength to carry weakness, and help, from you and other whom you send, to bear what I cannot bear alone. Use the drugs I take as agents of your; cause my body to receive them as good news of liberation from illness. Set my blood cells free from the burden of disease they carry and let them flow with energy and vitality. Make it possible for my bone marrow to work under conditions of freedom and for the sake of life, rather than under the tyranny of destruction and for the cause of death. Give me everything I need to live the life you are calling me to live; through Jesus, my Lord and Friend, Amen." 

Rev. Dr. Guy Sayles 

When things are looking down...remember

March is Myeloma Awareness Month