noahbug's Journey with Acute Lymphocytic Leukemia (ALL)

Survivor: Leukemia > Acute Lymphocytic Leukemia (ALL)

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: almost 15 years ago, Female, Age: 42

  1. 1
    • noahbug
    • Experience with Acute Lymphocytic Leuk...
    about 5 years ago
    noahbug's Avatar

    Diagnosed

    Oh No

    At the time of my diagnosis, I was 22 weeks pregnant with my son. I had been experiencing frequent and extreme bone pain through my hips and thighs for several weeks and was admitted to the hospital where preliminary blood tests revealed that I had an as of yet undetermined blood cancer. Our long and life changing journey began that night, December 12, 2002.

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  2. 2
    • noahbug
    • Experience with Acute Lymphocytic Leuk...
    about 5 years ago
    noahbug's Avatar

    What about our unborn baby?

    Decision Point

    Once we were oficially diagnosed on Friday, December 13, 2002 by a bone marrow biopsy, we were counseled by various specialsts who included several hematologists, high risk obstetricians and perinatologists regarding our treatment options. The specialists were divided; our team of hematologists felt that it would be too risky to begin treatment being pregnant and recommended that we consider terminating our pregnancy. Conversely, our perinatologists felt that the risk would be negligible and that we could continue with our pregnancy. We were warned by the hematologists that our child would most likely be born with an undeveloped brain and limbs if we decided to try and carry him to term. For us, there was never a decision to be made; we were going through with the pregnancy and would pray for the best, but face head on whatever ended up happening. Although this wasn't ever a difficult decision for us, it was an absolutely terrifying one.

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  3. 3
    • noahbug
    • Experience with Acute Lymphocytic Leuk...
    about 5 years ago
    noahbug's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    My experience with getting a central line placed was a rare one. Within 3 weeks, I had 7 different lines placed with each one failing for unexplained reasons. I had Hickmans, Broviacs, PICs and finally a medi-port placed. The external ports would work well for 24 to 48 hours but would then begin to leak from the insertion site. My doctors were very nervous about placing a medi-port because if it followed suit, then I would have toxic drugs leaking underneath my skin which could have been devastating if it went unnoticed for a period of time; however, because we were running out of options and my therapy schedule was being significantly affected, my doctors decided to take the chance and have a medi-port implanted. The gamble paid off in spades!

    Went as Expected: Strongly Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • noahbug
    • Experience with Acute Lymphocytic Leuk...
    about 5 years ago
    noahbug's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I began my therapy regimen one day after I was diagnosed. It began with high dose Prednisone and then several days later, the infusions started. My first 2 months were spent as an inpatient. Typically, the induction phase of treatment requires a one month stay, but because of the severe side effects I was experiencing and the toll it was taking on my pregnancy, I was admitted for a month longer. Although my chemo treatments began with ease, they quickly made me very ill. I had a very bad reaction to one drug specifically, which caused my liver to fail. At that point, I had to be taken off of all chemo drugs to try and let me liver heal; however, even after stopping all therapies, my liver continued to get worse. They began to test my brother and other family members to see if they might be a possible match as a donor even though we all knew that the chances of them being a match were slim to none. My doctors were trying to be reassuring, but they all said that they had never had a patient go longer than 2 weeks without chemo; I went 12. During that time, my water broke when I was 28 weeks and 3 days into my pregnancy and an emergency C-Section had to be performed when I was 29 weeks to the day. Our miracle son, Noah, was delivered to us at 10:35am and weighing in at a heavy 2 pounds, 7 ounces! My treatments continued for just under 4 years and consisted of various combinations of IV transfusions, chemo in pill form, cranial radiation and spinals to infuse my cerebro-spinal fluid with chemo agents to help prevent brain cancer. I would go to the hospital each day for treatments with 3 months of them spent between the infusion rooms or Interventional Radiology and NICU to be with my son. It was a very long road filled with many disappointments, but also celebrations. It was a journey which brought my already close knit family closer and gave each of us a new perspective on life; seeing what is truly important and taught us all to stay "present." Live for today, you can't change or control what lies ahead, but you can control your reaction and the knowledge and power you take away from the experience. We all have a "new normal" now which can at times be overwhelming, but we can find a silver lining to every cloud and enjoy life and each other in ways we had never been able to before.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    • noahbug
    • Experience with Acute Lymphocytic Leuk...
    about 5 years ago
    noahbug's Avatar

    Bone thinning (osteoporosis)

    Side Effects

    The side effects which I experienced were significant. Although I didn't get violently ill, I experienced liver failure, several GI infections, short term memory loss, significant weight gain, ulcers throughout my mouth and throat, neuropathy, severe fatigue, insomnia, depression and anxiety, loss of all my body hair, fatty liver, thinning bones, bone fractures and Avascular Necrosis of my shoulder and hip joints....the list goes on. Although most of the side effects I experienced resolved themselves over time, my short term memory loss continues to be a nuisance; however, the worst side effect I experienced was the bone necrosis which set in from taking Prednisone. My hip and shoulder joints for ease of explanation, disintegrated. I was in a wheelchair for a year and a half before I could find my angel of an ortho who looked at me as a person and not a disease. Although risky, he agreed to perfom bilateral hip replacements to give me a better quality of life. Sadly, I had several doctors tell me face to face, that because I only had a 20% chance of long term survival, I wasn't worth their time; they felt that I would be gone soon so why waste their time. Amazing. I had always thought that people became doctors to help others and were compassionate people. I quickly and very sadly discovered that they all didn't enter into the medical profession to be altruistic, but because they had an ego that could not be tamed.

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  6. 6
    • noahbug
    • Experience with Acute Lymphocytic Leuk...
    about 5 years ago
    noahbug's Avatar

    Other "cancer soldiers"

    Loss

    Around the time that I was diagnosed with ALL, there were also 6 other young adults diagnosed with the same type of cancer. It was odd because although ALL is a common cancer in the pediatric and geriatric populations, it was rare to see in young adults and much more lethal in our population. We were all in our 20's and otherwise very healthy; our group was made up og 6 men and 1 lone woman, myself. Sadly, I watched as one by one, they passed; quickly, without a remission or a glimmer of hope for a bit longer in this world. I quietly watched as one more soldier in this horrific battle was lost to an invisible killer who had no compassion for our souls. I waited, quietly for my turn to come, but for some reason, it never did. Today, there are only 2 of us left who survived the war. Why and how we were spared is a mystery to me, but I am grateful beyond belief. Words can not express how incredibly blessed and lucky I know I am which is why I try to tell my story and share my experiences. I hope that my knowledge and experience can help even one "cancer soldier" or family member, bring hope or inspiration to one hurting soul, prove that there are miracles that happen and that the fight can be won. I am not sure why I am here, but I try to be the best person I know how to be and remember that we all have a story which makes us who we are, so tread lightly, because you never know what lies behind someone's exterior.

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  7. 7
    • noahbug
    • Experience with Acute Lymphocytic Leuk...
    about 5 years ago
    noahbug's Avatar

    Remission

    Celebration

    Well, it will be 10 years since I was initially diagnosed in December and 6 years since I completed my treatments. In that time, so much has happened that I am forever grateful to have been able to watch and experience. My son is now 9 and a half and is a true wonder! He is a typical kiddo who other than being small for his age, has no lasting side effects from being exposed to so many chemo agents and narcotics while in utero! And although I was told that I was in early menopause from my treatments, I surprisngly and joyusly became pregnant again! Our daughter is 5 and another little miracle who brings a light and happiness to our lives which is inexplicable. Our family is blessed beyond measure and we are grateful and thankful for everything we have, every experience we share, every sunrise and sunset, every kiss and hug, every tear shed or pain felt and all the hurt we experience at times, because feeling these things, both happy and sad, means we are here; we are alive; and we are present!

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