My story! I have already shared a lot in my previous blogs and poems; you probably know it all.
First Dx: 1990, a kid who spends his time playing soccer is bound to have nasty bruises but short of breath? I thought I wasn’t fit enough so I exercised more, which made it actually worse with the joints pain, fatigue and shortness of breath.
That day is still vivid in my mind, the horrible pain in my chest and every breath felt more painful than the one before. I came home from school with fever and a bloody nose. Maggie thought I was fighting again and ignored me for the rest of that evening. It wasn’t until my dad tried to wake me up the next day for school that they realized how sick I was; my pillow was soaked with blood.
Dad rushed me to hospital and they did a CBC. WBC was 22.000 and my RBC had hit rock bottom; they gave me transfusion to save my life. I was diagnosed with ALL and there was a ‘mediastinal mass’ at the time of the diagnosis. They started chemo immediately.
Daunorubicin, vincristine, prednisone, asparaginase and methotrexate were given in the first month. Cyclophosphamide, cytosine, 6-mercaptopurine and methotrexate were given the next. During intensification phase the drugs were methotrexate, asparaginase and folinic acid.
After 3 month I was doing remarkably well. Well, to cut it short, chemo, radiation and CNS prohylaxis gave me a new shot at life however as a side effect of radiation I had ‘cataracts’ that dimmed my vision. A simple operation was needed but they opted for general anesthesia, which was a big mistake. My heart stopped during the operation. Well, not end of story actually. I’m still here.
Second Dx: 2003, Bradford, a university student, well to cut it short again, I wasn’t well. I had a feeling in my guts that ‘ALL’ came back so I just kept postponing seeing a doctor until I ‘collapsed’ and was taken to emergency. Knowing my history, they did the blood tests and it was BAD. So same old story, same combo, I went into ‘remission’ for a short while and relapsed while on ‘maintenance’. I contracted Pneumonia and ended up on a ‘ventilator’.
The relapse happened in the CNS, headaches, and seizures, sometimes the pain was so severe that I would lose consciousness; I simply ‘wanted to die’. My ‘girlfriend’ called my Dad and he came over. When the doctor told him that I had stopped treatment he did not respect my wishes. He declared me ‘mentally incompetent’ and forced the treatment on me. I didn’t speak with him for 5 long years after that.
After almost giving up they did a BMT in June. My donor was my girlfriend, a ‘match made in heaven’. Six month of observation and everything was fine. Biopsy was clean. I went back to university and finished my MA with first class honors.
Third Dx: 2010, the symptoms started again at the end of last year, the usual me, I ignored it until one day I woke up and my pillow was soaked with blood and the pain in my bones almost rendered me dysfunctional.
After the infamous ‘bike crash’ in February, they did the usual blood tests, and this time WBC was 38.800. The Doctor looked at me as if he was surprised I’m still alive and started talking the usual jargon that I’m tired of hearing. He said since I relapsed after a BMT, it was very unlikely that I will achieve remission. I remained in hospital for 28 days.
A ‘person’ I cared about actually blamed my failed treatment on the fact that I didn't see a doctor when the symptoms started. She even went further as to question whether the ‘crash’ was really an accident!!! My dad shared the same views. That's why I find it very hard to talk to him or open up, or even ask for his help. I wish I had stayed in Bradford, or in a hospice care instead of this. At a time that I need support, I feel like am being watched, “Is he going to break down mentally again and kill himself?”
I did chemo anyway and it failed, as expected. I suffered terribly from the side effects this time because my body could not handle the toxicity, beginning with the ‘mouth sores’ in April, ‘spleen infiltrations’ in May, and finally the biopsy showed 48% blasts in the bone marrow.
I had to go through induction ‘twice’ to prove to Dad that am not trying to kill myself, but I believe even if I stopped the treatment, am not killing myself, it's the ‘cancer’ that is killing me. Maybe it would be an act of ‘mercy’.
I finally stopped TX at end of June after ‘leukemic infiltrations’ were found in the CSF.
In fact my decision was ‘already made’ if it ever happened again; I’m not going to fight it. Well, three rounds, I won two and this time it’s still a tie. The doctor said if untreated I won’t live more than 6 months. I don’t want to live that long.
Last August my doctor put me on a ‘Fentanyl patch’ and a rescue med called Actiq, my so called magical ‘Lolly’. I hate being ‘dependent’ on drugs; it simply disgusts me, and I have been experiencing some nasty ‘side effects’, especially itchiness; I feel as if lizards are crawling under my skin.
Another side effect is ‘hallucinations’. I know that my friend ‘Charlie’ had passed away with Leukemia in 2005; nevertheless, he has been ‘with me’ lately. I dare not tell anybody about this lest my Dad uses this against me to prove that I am ‘mentally unstable’ again. I certainly have given him many reasons to doubt my sanity lately.
At the last ER visit my ‘platelet count’ was another red flag. Sometimes people with Leukemias get a complication called DIC (disseminated intravascular coagulation) which messes up blood clotting mechanisms resulting in excessive bleeding, internal bleeding or sometimes even blood clots. Transfusions are recommended when the counts are less than 10.000-20.000/uL. I dare not tell you my last result.
My illness in 2003 remains an unsolved ‘mystery’. The doctors were puzzled how I got sick while on ‘maintenance’; well I have a confession to make; I wasn’t. I stopped taking my medications after my ‘ill adventure’ in Egypt. I ‘cheated’ on the woman I love; the woman who gave me the gift of life. I was just turning to be like my father.
In 1977 my father was posted to France. He was married with two children. Unfortunately, my father got involved with a ‘French-Tunisian’ woman who later became pregnant with his child. Dad was already married so he couldn’t marry her. At first she wanted abortion but she didn’t go through with it. She had the baby and delivered him to my father. As you probably have guessed this child is ‘me’. I never knew my ‘biological mother’.
I grow with a family that doesn’t want me, doesn’t love me. Maggie, his wife, was decent with me at first but I never felt her love. I never had the love of a ‘mother’; I was brought up by babysitters and nannies. She always favored Joe and Cathy. That wasn't the problem really. I have known many dysfunctional families and the kids turned out OK.
Well, things didn’t stop there. They got worse as I got older, especially with my brother. My hands are shaking now as I type those words; Joe abused me since I was 5 years old.
He called it ‘play doctor’ and our ‘secret game’. When I got old enough to realize that what we were doing was wrong I told my ‘mother’; she refused to believe me. She slapped me on the face and called me a ‘liar’.
I was afraid that my father would do the same so I didn’t tell him. She told Joseph about my ‘lies’ and I guess he was scared to continue with his ‘game’ but he turned very aggressive with me. He was beating me and doing some nasty things you wouldn’t believe. Finally, I couldn’t take it any more and went to tell my father that’s when I heard Maggie yelling at him and bringing up the old story of his affair. She was referring to me as the ‘bastard’; I was 11 years old.
I ran away from home for almost a week. When the police found me and brought me home, everyone was so bloody cold. They didn’t want me back. I became a very aggressive. I used to take knives with me to school; I used to beat up anyone who mentions the word ‘bastard’ even if he/she were joking.
Things got better when we moved to Syria. I was happy at school and made very good ‘friends’. At home, Maggie was always busy and she ignored me. But the real reason I was happy was that Joe stayed in America. He no longer lived with us.
That’s why I couldn’t go through with it with the ‘Egyptian woman’ and ended up having a ‘panic attack’. I was repeating my father’s mistake. The next day I threw away all my medication and now I'm reaping the result of my hard-headedness and self-inflicted punishment. How could I do this to my girlfriend?
My dad way of handling his ‘domestic’ problems was therapy and counseling; he sent us both, Joe and me to shrinks. I'm not sure if that was helpful because I was such a difficult teenager, with a lot of rage, and many suicide attempts. I even slashed my wrists a couple of times. I had to work hard to fix ‘Me’.
I ‘learnt’ to forgive and love again but the pain is still there gnawing at me inside. Now, I could understand Maggie’s motives and her resentment for the child who reminded her of her husband’s infidelity. I learnt to forgive Joe because he was ‘sick’ himself. ‘No normal human being would do this to a child’. Now he is ‘straight’ and married. I just pray to God that he is cured and wouldn’t repeat the same story with his own children.
This is the family you want me to call for support. This is the family that will take care of me in my last days.
The only person that is important to me is my ‘girlfriend’. However, I could never make her happy. I have too much baggage to carry with me, emotionally and physically, too many scars that nothing could heal except DEATH.
I feel it’s ‘time’ to walk through the valley of the shadow of death. My ‘disease’ is progressing quickly and the inflammation in my heart is wearing me down quickly. It is time for ‘Mercy’.
I would like to thank ‘you’ for your support, compassion and sincere prayers. You were my lifeline when I was in total despair. Your kind word gave a glimpse of hope and soothed my troubled soul and eased the pain of this journey. Thank you for holding my hand all the way.
Again, I want to thank you, especially my ‘Willow’, for being there for me. I pray that God has decided to share this load with me because I can not carry it on my own any longer. I’m too tired.
Goodbye and God bless you all
Marc J. Kennedy