This is how it all began…..
In May of 2010 I went to my family doctor because I had a persistent sore throat that I just couldn’t get over. No biggie, I mean with Adam in school and him bringing home every stinking virus I was not worried about it. They drew my blood and found my white blood cell count and leukocytes to be elevated. These numbers would be expected with my symptoms.
As the month went by, my sore throat went away but the lymph nodes were still present on my neck. This bothered me a little and I felt it necessary to go back to the family doctor and have my counts drawn again. The results showed that the white cell count and leukocytes were still elevated. The doctor explained to me that I still may be fighting something off. Not acceptable. Not my body. I want another round of testing in two weeks! The nurses thought I was nuts that I would elect to have needles poked in my arms so often. Well, not to my surprise, two weeks later the lymph nodes are still there, they don’t hurt, they are hard, and my numbers are higher. Keep in mind that at this point I feel perfectly fine. I am not sick and have no symptoms.
The doctor thought it would be best to refer me to a hematologist who is one who specializes in blood and blood diseases. My appointment would not be for six weeks! Are you kidding me??? What is wrong with our health care? I mean, if it is something wouldn’t they want to know ASAP? What can you do? I mean in this free country that we live in I was feeling like a prisoner to the health system.
I continued my life at this point working, being a mommy, being a housewife, being a friend, being a sister, a daughter, being as strong as possible. I did however feel it was a good idea to have my blood drawn once again after 3 more weeks. I mean, why bother going to a specialist if my numbers came back down during this 6 week wait.
I was feeling fine but those darn lymph nodes were still hanging out on my neck! And the testing proved that the leukocytes were still elevated. At this point my gut was telling me something is wrong. And so I waited.
On August 10th 2010…yes, 3 months later, I had my appointment with the hematologist at a hospital in Akron. They drew 13 vials of blood on me and did extensive testing.
My follow-up for this testing was scheduled for August 19th.
August 19th 2010. A date that is implanted in my brain forever, the day that the doctor sat in front of Rob and I as she read my blood results as if she was reading a book to someone. She was telling us that all these markers are markers for Lymphoma. We could not even comprehend what she was telling us. Our world was collapsing right before our eyes. And of course all the questions started pouring out. What do you mean? How could it be? Are you sure? I am only 37 with 2 small children! What is the prognosis? Will I die soon? I don’t feel sick!!! Oh boy. What has just happened?
Needless to say, my life started over on August 19th. Life would never be the same in the Filina home. The Akron cancer center had no answers for us. We were basically given a death and doom prognosis with Non-Hodgkins Lymphoma. And to be honest, what I knew about this disease only validated their prognosis. My life was going to become one full of testing, testing, and more testing. Included in this testing would be a bone marrow biopsy and yes, it hurts. Ouch. I am a strong cookie but that, my friends, I would never wish upon my worst enemy.
So what did you do you ask? We cried, we cried, we held each other, I held my children, we cried, we prayed, we cried, we prayed, I kissed my babies over and over and over, and then we cried some more.
Thank God I have Rob in my life because he immediately got on the ball and started doing his research. He was determined to find the best doctors for me and was prepared to travel across the world to them if needed. Well, we wouldn’t need to travel across the world because the specialists happen to be right here in Ohio at The Ohio State University Medical Center. The James Cancer Center was going to answer all of our questions.
From the first phone call I felt like we made the right decision. The people who work at The James are incredible. They are all so knowledgeable and we were so anxious to get to out first appointment, which happened to be the following week. I was very happy with how quickly they responded to our needs.
I can not tell you how happy I am that we found this facility. Of the top 100 CLL specialists in the world, only six of them are in the United States and three of those six happen to be right there at The James Center- coincidence or fate?
Not only am I honored to be getting my care at the hospital of my Alma Mater, but the doctors there know so much about this disease which they further explained to me to be CLL or Chronic Lymphocytic Leukemia. They treat CLL as a separate disease from Non-Hodgkins Lymphoma and further more treat it differently in each individual. So this is MY CLL and in a completely separate category from anyone else and they treat and manage MY CLL on as an individual disease. Don’t I feel special! And that is not sarcasm you hear, I really do feel special and they gave me so much information which, in turn, gave me so much hope.
So now I can continue my life with hope as they drew more blood to further test me specifically for CLL markers in order to categorize it on a prognosis stand point. I find it important to add here that the horrific bone marrow biopsy results were inconclusive as far as CLL specialists are concerned. The Akron Shaw Cancer Center failed to order the correct tests therefore my pain and discomfort that day was for NOTHING. The only reason I added that statement in my story is to highlight how important it is to find the right doctors that know you and your disease. And I thank The Lord everyday for Dr. Flynn and his team at The James Cancer Center for their hard work and for knowing MY CLL.
In October of 2010 I had my follow-up appointment at The James to talk about the results of all the blood work that was drawn the month before. So, I need to insert here that I honestly have not taken a breath of relaxation since this has all began and I had hopes and much belief that they would give me some favorable news. What I knew at this point is that it can come back one of four ways. I can have an 18 month, 5 year, 10 year, or over 30 year prognosis depending on which gene is doing the mutating.
Rob and I are sitting in the doctor’s office waiting for the doctor to come in and the entire time my jaw is clenched and I am holding Rob’s hand for dear life. All I can see in my mind are the faces of my two beautiful children and I am praying and praying that I will be able to continue kissing those faces for a long time.
The doctor walks in and I know he sees my anxiety. Dr Flynn has a kind smile and sits down in front of us. I proceed to tell him if he doesn’t have favorable news he should just walk right back out that door. Dr Flynn sits back in his chair and crosses his legs. Just then I knew that whatever it was he was about to tell me it for sure wouldn’t be the worst case scenario. Praise The Lord! I do not have the gene mutation that will take my life quickly!!! He even told me I would see my children grow and that if and when I need treatment it won’t be the treatment we all think about when we think of cancer. He tells me that the treatment is basically a shot and then you are back to work the next day! WOW! FINALLY! Some light, some hope to carry me through my life. He also told us that there is a drug that is in the final stage of clinical trial that will be used to control and manage CLL. Just like taking a pill for diabetes or hypertension, I can take a pill for CLL to manage it. This is wonderful news. Rob and I felt a huge weight lifted from our shoulders. We walked outside to our car that was parked on the top outside level of the parking garage. It was a beautiful sunny day with a bright blue sky and the most white clouds I have ever seen. I took a moment as Rob got into the car to look up at the beauty of the sky and I felt the most comforting breeze envelope my body. It was a moment I will never forget. I felt God for the first time and I received his message that from now on everything is going to be just fine. Enlightenment is a beautiful thing and I thank my diagnosis for allowing me to come to this point in my life.
Now my life can really begin. I have a new look on life that I would have never had, had it not been for the diagnosis, I have changed my diet and I am feeling better now than I ever have in my life! Life was good…..for the month of October that is, but hey, I’ll take it.
I say that because on November 1st 2010 I got into my car after work and noticed my right eye had a raised surface on it. I didn’t like it at all so I went to Lens Crafters immediately after work. They told me I had an eye injury and gave me some eye drops and antibiotics and told me to come back in one week. One week later, the eye was worse which caused some concern because the doctor expected it to be all better by then. I really never believed what they were telling me. Once again, I know my body and no one will ever know it more than me. I don’t care how many degrees and how much medicine these doctors have specialized in. I wish doctors would learn to listen to their patients more, one of my big complaints of American medicine. Anyhow, I was sent to an eye specialist and after several weeks of them doing the same thing every week and having no improvement they sent me to the Cole Eye Institute at the Cleveland Clinic to an eye cancer doctor. This was on Tuesday December 6th and they scheduled me for surgery that Friday the 9th. The eye surgery went fine and recovery was longer than I expected but happy to have my eye feeling better. I had my follow up appointment last week, December 21st 2010, and the biopsy report came back as a B-cell lymphoma. This result did not surprise the doctor at all and he reassured me that he believes it is the same existing disease just showing up outside of the lymph nodes. He believes I will not need any treatment at this time and we will further discuss these results with the CLL specialists in Columbus at my next appointment on January 12th 2011.
I hope all of you who have read this have a better understanding of me and what we have gone through this year. I love each and every one of you and know with certainty that I will keep getting stronger and stronger and I WILL kick this out of my body.
Today is May 5th, 2011. One year ago I went to the doctor and they found my white cell count a little elevated. Today I prepare for my first round of chemotherapy at OSU James Cancer Center which will begin Friday May 13th....oh how I love Friday the 13th :) After a round of testing and yes, another bone marrow biopsy (have I mentioned how much I dislike this?) we have come to this point in my journey. I truly believed with my whole heart and soul that I was going to make all this go away with hope, faith, and the with changes I made in my lifestyle. Initially I felt defeated and broken when Dr. Flynn told me that treatment will start next week. It would not register in my mind at all. What do you mean? I know I can do this without the invasive approach of treatment. We just need to give it more time to work out of my system, right? For whatever reason my body has decided that it needs the help of modern medicine and I thank God for it everyday. So we are ready to go in strong and come out even stronger.
This is what is going on in my body as I understand it. For some crazy reason my DNA mutated as some point (we are speculating 5-8 years ago). This new transformation has made my bone marrow make some funny looking white blood cells that are immortal. Wow, in a sense I am immortal…pretty cool. I knew I loved the Twilight series for a reason J
Slowly these cells keep collecting in my body since my body does not know how to rid them. They are not recognized and now have compromised my red blood cells. The red blood cells are the working cells in the body. They carry oxygen and when they are compromised the hemoglobin counts can drop, which is what is happening currently in my body.
Just to give you perspective, the normal white count is 5,000 units. When you have a sinus infection they may rise to 12,000 which are where my numbers have been the last 3 years. The doctors kept blowing it off telling me I was probably just getting over a cold, hindsight is 20/20…oohh, I’ve always wanted to write that ;)
Where are my numbers today you ask? 251,000!!! OUCH! And at this point they are taking over the majority of my blood and have caused the red blood cells to drop...and we need those cells to take oxygen to the body
It’s unbelievable that I still am strong and do all that I do in my day. I credit that to the naturopathic route I have taken throughout this entire escapade.
I suppose that is reason enough to get all those bad cells out. The treatment I will be receiving is very effective and has 96% remission in the end. Sounds great to me! I am 150% on board with this regimen.
The tough part is going to be staying healthy for the next 6 months. Let’s all pray for no set backs and that I get to remission and stay there forever.
Love like there is no tomorrow, dance as if no one is watching, run outside in the rain, and live with no regrets.
We began our journey the Friday after Mother's Day in May of 2011. Well, needless to say, the route chosen was not just a shot and then back to work. It would be three days of chemo once a month for six months. This time in my life will always be looked upon as extra special. A time when my parents came to our home to watch the kids and Rob and I would take off for Columbus to heal. It was so beautiful to have Rob by my side and to have the staff at OSU James Center through this healing process. I can not extend enough gratitude to those who work there. We had some bumps in the road, some reactions, a couple infections, and many many days of feeling sick but my belief got us through it. There will be a separate blog entry regarding my Belief and how strong it made me but for now, just believe me when I tell you that you must believe in your cure...whatever your cure may be.
In December of 2011 I had, yes another, bone marrow biopsy to confirm that my body followed my mind and spirit into complete remission. God is good.
Once again, I love you all.
Live the day because you never know what tomorrow may bring.
Oh, and always believe.
More Parts since Part Three.
This will be the condensed version of what has happened since Part Three. After 2 years of remission I relapsed and was placed on Imbruvica (Inbrutinib). This is a non-chemotherapy maintenance drug with very little side effects. I tolerated it well and it actually put me back into remission. This outcome, I was told, is pretty rare so you could imagine my joy. Life was moving along swimmingly with visits every 6 months now. Things were good.
Unfortunately, in February of 2015 we found out (yes, through ANOTHER bone marrow biopsy) that my genetics had mutated and the Imbruvica was beginning to not work. 1% of my cells were resistant to this drug. This scared me like you wouldn't believe because the next step was Bone Marrow Transplant. The good thing was that we had some time so the search for the perfect match began.
In March of 2017 the transplant process began. Testing, testing, scans, scans, and more testing...
Needless to say, we never found that perfect match. Please consider registering to become a donor. Most times it is a blood draw with very little to no side effects. Good news is that they would use my brother who was a half match or Haplo. My doctor was very hopeful and positive and I believed her when she told me it would work. Dr. Leslie Andritsos (picture below) is the best transplant doctor in the world. With this type of transplant, being that my brother only matched on half of the markers, there were some risks of the stem cells attacking things it shouldn't. This is called Graft vs. Host and you can get it acutely or chronically. I ended up getting both.
THE TRANSPLANT WORKED but I have been battling Graft Versus Host for almost a year and a half. Things are slowly getting better and the steroids and anti-rejection drugs continue to reduce. I see a light at the end of that tunnel finally :)
Today is October 22 2018 and I would like to leave you the link to my Facebook page if anyone would like to follow me and see what I have been up to since April 2017.
jojo 4 life
I love you all
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