My mom woke up one morning and got dressed for work and like most women, myself included, she didn't really like the outfit she had put on that morning. So she quickly changed her shirt, but while pulling it off, there was a bit of a struggle and it felt like she had pulled a muscle. When she got to work the pain was increasing so dramatically to the point it hurt to sit or stand or walk, pretty much moving was almost impossible.
She knew she needed to get home to ice it before she wasn't even capable to drive. Once she arrived home the pain had escalated even more and my poor mom wound up having to call an ambulance to take her to emergency because at this point she could not even put her foot on the ground without passing out.
Unfortunately my mom has several stairs in her 3 level condo, she has 25 stairs going straight up to the main floor and another 25 steps going straight up to the bedroom.
The EMS came and were struggling with the safest way possible to get her down on a stretcher without the potential of causing more damage to my mom, so they decided to give her gas to walk down with assistance.
After going to the hospital, getting x-rays, a CT Biopsy, an MRI and finally a Bone Marrow Biopsy, it was confirmed that my mom has MM Cancer or more often called Multiple Myeloma. In layman’s terms, my mom’s bones are detreating and starting to fracture from everyday activity such getting out of bed, getting dressed or just walking to get your morning cup of coffee.
She has been employed for 12 years now in the Human Recourses field and this has come to an immediate halt because she can’t physically get to and from work any longer.
Financial burdens are kicking in as she's not in a financial position to move herself into a safer home, like a bungalow or one floor condo where she doesn't have 50+ stairs to climb every single day up-and-down.
Did I tell you she is still a vibrant young woman with so much more life to life??
One of the fixes for the stair issue would be a lift to help get her safely up-and-down the stairs. Unfortunately a lift can cost anywhere between $8,000 to $10,000. Which is money she definitely can't afford and there is no more money coming in from work but there are still bills flying her way at a rate she can’t financially keep up with.
Please know this; my mom has never ever been one to ask for anything in her life. She raised us kids on her own without any help and by barely making ends meet. She has always been the caregiver in any relationship, and is always putting the needs of everyone else before her own. She would never be able ask for this, so through us her 4 children and some really great friends who love and know the kind of woman my mom is and has always been, we need to do this for her.
The stress alone regarding the diagnosis and then the treatments that she is having to go through, just to have some hope to live a life long enough to see her grandkids born and her children married, is hard enough let alone having to worry about where to find money to be able to afford the extra treatment cost and all of the other extra costs that one would never expect or have to normally experience in their life, can put a person into a place of hardship that keeps them from getting the help they need.
I know that sometimes we don't know how to help or what to say or do, but we always have a few dollars that could help and make all the difference in the world. Please, I mean please, if you can do $1. or $1,000. That would make the world to my mom as we try to keep her bills and mortgage paid.
What is MM and what does it all entail...?
This may be a little technical but I feel this is important so you can fully appreciate my mom’s circumstance.
Multiple Myeloma is a cancer formed by malignant(bad) plasma cells. Plasma cells are found in the bone marrow and are a very important part of our immune system.
The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.
When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies that help the body attack and kill germs.
Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make different normal blood cells.
When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma.
These tumors generally develop in a bone, but they are also sometimes found in other tissues. If someone has only a single plasma cell tumor, the disease is called isolated plasmacytoma. If someone has more than one of these plasmacytoma, they have multiple myeloma.
Multiple myeloma is characterized by several features, including:
· Low blood counts- MM can cause an overgrowth of bad plasma cells that can push and crowd normal blood cells out leading to low blood counts. This usually leads to anemia and causes people to become weak and fatigued very easily. MM can also cause levels of platelets in blood to become low which can lead to increased bleeding, easy bruising and infections/wounds that won’t heal.
· Bone & Calcium Problems- MM also hinders growth and function of the cells that keep your bones healthy and strong. Bones are constantly being regenerated and maintained by the body to keep them strong. There are two main cells that do this, osteoclasts which break down the old bone and osteoblasts which build new ones. Through some medical mumbo gumbo MM tells osteoclasts to break down bones faster and osteoblasts can’t keep up, thus your bones become brittle, weak, and break very easily. (*This was why my moms back broke so easily just taking off her shirt)
· Infections- cancerous plasma cells do not produce antibodies that normal plasma cells do. Antibodies are what fight off infections in our body and therefore when someone has MM, they are way way way more susceptible to infections and illness.
· Kidney Issues- Cancerous plasma cells create something (don’t fully understand) that can really harm the kidneys and lead to damage or failure.
Those are the main ones although there are more, they’re just a little more science-y and in-depth and I want you to keep reading!
So why does someone get MM? No one really knows. Bad luck of the draw? Genetics? Science has only come as far as to determine that specifics genes that may be linked to a higher probability of MM…soooo basically nothing.
How can you treat MM? You never really “treat” it but there are ways to manage your cancer and eliminate it to a point where you can hopefully live symptom free. These range from drugs, radiation, chemotherapy, to the most extreme- stem cell transplant.
What is a stem cell transplant?
A stem cell transplant (sometimes called a bone marrow transplant) is a procedure in which diseased bone marrow is replaced by highly specialized stem cells that develop into healthy bone marrow.
There are two main types of stem cell transplants: autologous, in which the patient receives his or her own stem cells, and allogeneic, in which stem cells are donated by another person. I’ll mainly focus on the AUTO type as that is what the plan is for Robyn/RubyAnne/Mom to undergo.
Stem cell transplant is a procedure that is most often recommended as a treatment option for people with leukemia, multiple myeloma, and some types of lymphoma. During a stem cell transplant diseased bone marrow is destroyed with chemotherapy and/or radiation therapy and then replaced with highly specialized stem cells that hopefully develop into healthy bone marrow.
A patient undergoing an AUTO stem cell transplant receives his or her own stem cells. During the AUTO transplant process, the patient’s stem cells are collected and then stored in a special freezer that can preserve them for a long time. When ready, the patient is treated with powerful doses of chemotherapy and/or radiation therapy, and then after that the frozen stem cells are thawed and infused into the patient’s vein. The healthy stem cells remain in the bloodstream until they find their way to the marrow where they grow and multiply, beginning the healing process.
The stem cell process includes
· Stem Cell collection– collection bone marrow usually from either hip or spine. OUCH! It hurts like hell.
· Transplant treatment– this really like the prep for the actual transplant. Consists of HIGH doses of chemo and or radiation to essentially kill of all the bad cells, which in turn also kill the healthy ones too. Very important to remain clean and very cautious of germs.
· Stem Cell infusion– Surprisingly very fast process. Not more than an hour or two. They just put your own healthy stem cells back into you
· Recovery– This is really just taking good care of yourself and managing your symptoms. You have virtually no immune system at this point so you have to be very cautious. You also are dealing with all the side effects of your treatments (think Chemo symptoms like nausea, dry mouth and sores, bone soreness, muscle soreness, pain, oh and probably any other bad thing you can think of too) it seriously sucks.
How do you know if it's “worked”?
“Success” means different things to different people. Two common milestones for patients, their families, and doctors to measure success are:
· Recovery of blood counts to safe levels. The true measure of recovery is the return of blood counts to normal levels through the multiplying of healthy stem cells.
· Cure of the disease. The intent of stem cell transplantation is to cure the disease. For some types of cancer(multiple myeloma included), a cure is not possible but prolonged remission (time spent without any signs of cancer) is the best result, which is what we are hoping for.
So there you have it! All you ever wanted to know about MM. Robyn/RubyAnne/Mom is at the beginning stages of all of this and it's going to be a long tough road ahead. Currently she is on a chemotherapy treatment called CYBORD, which she receives weekly in addition to a monthly added Bone Builder IV called Zometa which is a bisphosphonates.
Bisphosphonates are medications that help strengthen the bone. Bisphosphonates approved for treating bone loss from multiple myeloma: zoledronic acid (Zometa). This drug is given intravenously (IV) through a vein. The side effects may include flu-like symptoms, anemia, and joint and muscle pain.
Uncommon but serious side effects have been identified in some patients, including:
· Kidney problems
· Acute kidney failure (when the kidneys suddenly stop working)
· Osteonecrosis (bone loss/weakening) of the jaw. Symptoms include pain, swelling, and infection of the jaw; loose teeth; drainage; and exposed bone.
Recommendations for the use of bisphosphonates for multiple myeloma:
· Patients with multiple myeloma who experience bone loss or fractures of the spine from osteopenia (lower bone density that leads to weaker bones) should receive zoledronic acid every three to four weeks. Each treatment of zoledronic acid should be at least 15-30 minutes.
· Bisphosphonate treatment should be given for two years. At two years, bisphosphonate treatment may be stopped if it is working. Treatment should begin again if the myeloma comes back and new bone problems develop.
· To learn whether a bisphosphonate is causing kidney problems, the level of creatinine (a measure of kidney function) should be checked before each dose of zoledronic acid, and patients should be monitored every three to six months for albuminuria (high levels of the protein, albumin, in the urine that might indicate damage to the kidneys). The drugs should be stopped for patients who develop kidney problems while receiving a bisphosphonate, but they may be resumed once the problem is identified and resolved.
· The maker of zoledronic acid previously recommended lowering the treatment dose for these patients.
· Osteonecrosis of the jaw is an uncommon but potentially serious side effect of zoledronic acid. Before treatment, patients should receive a thorough dental examination, and any tooth or mouth infections should be treated. While receiving bisphosphonate treatment, patients should avoid having any invasive dental work done, such as dental surgery, and take good care of their teeth, mouth, and gums.
· Bisphosphonates may be used to treat pain from bone disease. For patients who are already experiencing bone pain, bisphosphonates may be used along with other standard methods to relieve pain, such as radiation therapy, pain medication, or surgery for bone fractures.
It's so scary when the side effects that seem worse than the actual help it is supposed to provide. But Robyn/RubyAnne/Mom is strong and she's got this, this procedure will go on for 6-8 months, and then the hard heavy duty chemo and radiation will be the next step before they can do the bone marrow transplant.
It’s a little scary for all of us (her probably the most even though she would never admit it) because you are only allowed a certain number of transplants in your life, we pray the first one takes and she's able to live a long healthy life without any more symptoms and bone breaks.
It's very hard for her to deal with all this as unfortunately she cannot be exposed to too many visitors and you know how my mom loves to visit.
As my mom would say, this cancer is just another trial some of us are given in our lives to teach us something.
My mom has taught me so many wonderful things in my life and one of the most important to me has been watching her throughout this process.
Her faith is what gives her strength and even though she has cancer this has somehow made her even stronger!
Life hands you some crappy things sometimes to no fault of your own and you just have to make the best of it. No whining, no wallowing, just live life.
Thanks for so many great lessons mom!