Well hello there!
For those of you reading my work for the first time, please check out the first part of “How I Survived When My Body Gave Up” or else this crazy story won’t make any sense and you will be left in confusion.
For those of you who read the first part to this story and decided to come back, I want to thank you for WANTING to read the rest of my journey. You could’ve decided this shit was too long or too boring. However, you are here. For that, I am humbled.
Picking up where we left off:
After Ethan’s diagnosis, my counts dropped again. My doctor booked a bed for me at another hospital to receive the ATG treatment. I explained previously that Aplastic Anemia is believed to be an autoimmune disease, when Therefore, it is treated with immunosuppressive therapy.
According to AAMDS.org, Immunosuppressive drug therapy lowers your body’s immune response in aplastic anemia. This prevents your immune system from attacking the bone marrow, allowing stem cells to grow, which raises blood counts. The two drugs used are ATG and cyclosporine.
AAMDS.org gives the complete breakdown of both treatments. ATG is given by IV infusion into a vein for 8-12 hours a day, for 4 days. ATG works by killing specific cells in your immune system called T-lymphocytes — the cells that are attacking bone marrow stem cells in aplastic anemia. This allows an aplastic anemia patient’s bone marrow to rebuild its supply of bone marrow stem cells, causing blood counts to go up.
Cyclosporine prevents T-lymphocytes, a type of white blood cell, from becoming active. Once the T-lymphocytes are turned off by the cyclosporine, they stop attacking stem cells in the bone marrow. In aplastic anemia patients, this allows bone marrow stem cells to grow back and start making blood cells again.
Cyclosporine is typically used in combination with ATG to treat acquired aplastic anemia. It is also used to prevent rejection after an organ transplant and to reduce immune response after a bone marrow transplant.
Both improve blood counts in 7 out of 10 cases. Besides that, there is no known cure for aplastic anemia but a bone marrow transplant.
When I got there to the hospital, I was given my bed and change of clothes. When my counts were checked, my bed was flattened and elevated. I had a team of doctors and nurses, preparing to place the IV in my carotid artery located in my NECK. That’s where the treatment would be administered.
I felt them shove the IV in, along with them stitching it to make sure it stayed in place. I yelped. Not out of pain, but out of the fear. The sheer idea that something was now sticking out of my NECK panicked the living shit out of me. This was supposed to go on for at least four days. With this shit ATTACHED to my NECK? Could I bathe? Eat? Cough? WHAT IF I FELL IN THE SHOWER!?!? I kept imagining me or someone else tripping over my IV and the contents of my neck spilling and splattering everywhere. It’d be like a Dexter episode after he was done with his bloody fix. Needless to say, I was scared to leave the bed.
The next couple of days were a blur. For four days, I was administered the ATG at night and I was given the cyclosporine pills at the same time. About 10 of them, to take all at once. Those things were the size of horse pills. They smelled too. Like a fusion of valerian root and a skunk’s anal glands. When the treatment began, I gradually found myself covered in hives followed by a fever. Typical symptoms as a result of the treatment. I was given medicine for both and they calmed down. I remember being in and out of sleep.
The four days came and went. The piece in my neck was removed. It was more painful this time around. They cut the stitching and pulled it out. I felt it all. They closed me up. I was free to go. It felt odd to speak. I still felt the presence of that IV in my neck. The way a woman feels phantom kicks from time to time postpartum. Every time I talked, yawn, coughed or sneezed, I imagine the wound splitting open, shooting a fountain of blood.
Yes I know, morbid. Whatever. I can’t help where my brain goes.
I was given cyclosporine to take at home for months to maintain the effects of the ATG. Everyday, I would take 10, until the doctor felt it was safe to taper off. About two weeks after the ATG and cyclosporine, there were little to no changes in my blood counts. My white blood count had risen to normal levels, but my platelets and hemoglobin cells kept dipping. I was still dependent on blood transfusions.
We were closer to July and my oncologist was becoming impatient. She wanted to repeat the ATG again. I was only weeks away from the wedding in August.
I refused. That treatment would shut down my immune system again completely. I wouldn’t be allowed to attend my wedding. I didn’t want to walk down the aisle with a fresh wound in my neck. I didn’t want the bruising from the constant IVs and needles on full display while I had my first dance with my husband. I wanted to make believe, for ONE day, that none of this existed. I wanted to be that bride that could say it was the happiest day of her life. Thank goodness I did.
I told her she could do whatever she wanted to me after the wedding. Otherwise, nothing was happening before.
About a week or so before the wedding, my counts stopped dropping. They were still low, but they were maintaining themselves. From that point on, I was no longer transfusion dependent.
We got married. I didn’t die, clearly. It was a beautiful ceremony and reception. We wrote and recite our own dorky but loving vows. They were the epitome of everything our relationship stood for. They were “us” and couldn’t have been more perfect. I danced my ass off. I needed to sit from time to time to catch my breath, but I’ve always been a party animal. I certainly got up every chance I got. There was so much love present that day. I’d never felt more blessed.
From that point on, my counts kept going up. The white blood cells had shot up weeks before. Then came the platelets. Hemoglobin always came in last place.
As the months went on, the hematology appointments became less frequent. My doses of cyclosporine got smaller and smaller until I was completely weaned off. Every time I went, I’d find out my counts increased. I was on cloud 9.
So… how are things now?
Quite swell. Ethan is awesome. He is 5 years old now. After his diagnosis, he immediately began receiving the services and therapy he required at home. By fall 2014, he was already attending a center based program and has been ever since. He loves school. He is set to start at a charter school that specializes in autism in September. He now makes eye contact, seeks out hugs and kisses. He jumps, he laughs. We have inside jokes. He sings songs and expresses his needs as best as he can for the moment. The improvement is like night and day. Alex and I are very proud of him.
As for me?
On May 21, 2014, at the very beginning of our story, these were my counts:
Normal Range
Hemoglobin: 4 (12.3 – 15.3)
Platelets: 13 (150-400)
White blood cells: 2.2 (4.8-10.8)
On Friday, July 7th 2017, my counts were the following:
Hemoglobin: 13
Platelets: 234
White blood cells: 7.4
Three years. It took three damned years to get them officially back to normal. Happiness could not describe what I felt. Once I built up the will to survive, my determination picked up again. There was no stopping me. I believed with every inch of me that my body could heal. I felt it in my gut. My doctor told me when my counts got better, but weren’t in normal range quite yet not to get discouraged. This was my “new” normal. Fuck that, I thought to myself. My body is strong. It took me this far, farther than any doctor thought it would’ve. I had faith that I would only continue to heal. My gut was right. I did it. I was in remission.
There are times when my mind flashes back. I haven’t forgotten that ATG and cyclosporine are not cures. They have the capability of putting you in remission, and that’s what it did to me. I am still very much aware that a relapse is always possible. It still scares me. I don’t want to live my life in fear though. I look forward to the future and making the best for what’s in store for me.
Now, let’s call a spade a spade, shall we? When you read this, its possible you empathized. Maybe even shed a tear or two.
You also may have thought this piece was dramatic. It’s possible you rolled your eyes and said to yourself “I get that she was sick and all, but why is she spilling out her guts out on the internet? Why is she putting her business out there for the world to read ?” or “Why do I need to know this? Why should I care?”
I’ll tell you why.
The National Marrow Donor Program states the following:
“Every three minutes, one person is diagnosed with a blood cancer. Every 10 minutes, someone dies from a blood cancer. That’s more than six people each hour, or 148 people each day. Patients are searching for a cure. It could be you. A patient’s background affects matching. When it comes to matching human leukocyte antigen (HLA) types, a patient’s ethnic background is important in predicting the likelihood of finding a match. This is because HLA markers used in matching are inherited. Some ethnic groups have more complex tissue types than others. So a person’s best chance of finding a donor may be with someone of the same ethnic background.”
You read correctly. You can only be matched to someone with the same ethnicity as you.
This is the likelihood of finding a matched donor by a patient’s ethnic background:
Caucasian: 97%
Hispanic: 80%
American Indian: 77%
Asian: 72%
African American: 66%
Yup. Caucasians are the leading ethnic group donating bone marrow. So as a minority, you have much LESS of a chance of finding a donor. I can tell you by experience. I’m a Latina and out of 80%, I don’t have a match. Why? Because minorities aren’t donating.
Did you know that aplastic anemia is most common in Asians? Yet they only have a 72% chance of finding a donor.
Did you know that sickle cell anemia, another illness that can be cured by a bone marrow transplant is most common in African American people?
According to The National Heart, Lung and Blood Institute, 1 in 13 African American babies is born with sickle cell trait. Also, about 1 in every 365 black children is born with sickle cell disease. They only have a 66% chance at finding a donor.
There are CHILDREN dying from blood disorders everywhere while there are people existing in his huge world, who have capability of saving someone’s life. YOU could literally be someone’s cure.
You need to know this because you are not invincible. I went my whole life never being ill, taking full advantage of my health. I bet you sit there thinking to yourself, it could never happen to me. That you’re one of the “lucky ones” who will never have anything earth shattering come at you from left field. Shit, I don’t blame you. I was just like you.
I swore nothing like this could ever happen to me. Yet it did. It did fucking happen to me. I’ve thought time and time again, “What did I do to deserve this? What did I do wrong?” Eventually, I stopped.
At some point, you’ve got to stop dwelling on what you can’t control and directing your attention on what you can. You can’t control if you or anyone else dies by some freak accident. Whether they got hit by a truck or eaten by a shark, some things are inevitable. When it’s your time, it’s your time. That’s a part of life.
But THIS. THIS has the potential to be controllable and avoidable.
I hope reading about my experience moved and educated you. I hope the statistics I provided you with, gave you sense of awareness you didn’t have before. Maybe even inspired you to inquire about becoming a potential donor.
Society could use the change. We could all start by giving a fuck about each other.
Interested in information about becoming a donor? Check out
https://bethematch.org/about-us/how-we-help-patients/be-the-match-registry/
Thunderkatzz 