Treatment Plan

After the devastating news, a treatment plan was laid out. It consisted basically of chemotherapy and red cell transfusions. After the initial shock, I had to give Janet so much credit for handling this with grace and optimism. The ultimate goal was to get her body ready for the stem cell transplant. The idea was that the chemo would lower the “blast” (immature red cells) count. When she was first diagnosed, her blast count was 16; not good, considering that 20 indicated that the disease had progressed to AML (acute myelogenous leukemia)–very scary. Since then she has been coping day by day–sometimes the only way to cope.

Janet is by nature an optimist, but all the stress of worrying about whether or not the treatment would work had taken its toll. Each time she would go for a bone marrow biopsy, it seemed that the blast count had not gone down. It was so heartbreaking one day when I met her in Starbucks and her optimism was being replaced by talk of “clinical trials” and the unspoken thought of actually dying was in the air. What brought this on was that she was scheduled to have another bone marrow biopsy and she was just “sure” that the results would not be good.
But, the many prayers were answered because the blast count was way down, making room for the actual stem cell transplant. After many months of hoping for a miracle it seems that this was now possible. She is certainly not out of the woods by any means, but at least there is a chance for a cure, something she was beginning to think was not possible.

Life Changes in an Instant

1/22/14
Life changes in an instant. I, of all people should know that, but my medical problems were a slow slide into hell. But what about when something unexpected and out of the blue hits home. Here’s the story of my friend’s ordeal that she is still going through.

Back in August 2013–just 5 short months ago–my best friend since I’ve been 6, calls me and wants to go out for dinner. OK, it was my birthday she was travelling in Europe somewhere (can’t keep track of their travels) for my July birthday and we traditionally take each other out for dinner. So, when she called and wanted to go to the Mexican restaurant that weekend, it really didn’t seem that odd at all. Never mind that I’m usually the one who arranges things, but still I was happy to see her since she had been gone for about a month. I was totally unprepared to hear what I did.

We had a great dinner, catching up on our lives, specifically my issues. As we usually do, after dinner we sat outside on the benches and continued the conversation. So, after telling her my tale of woe, I looked at my watch and saw that it was getting late, so I said I would get going. She then said to me, “Wait a minute, sit back down, I have something to tell you.” Right away alarm bells started going off in my head. I said, “Please don’t tell me something bad. Tell me it is not something bad.” She had this really serene look about her and she assured me it was nothing that terrible. I was like a kid who didn’t want to hear; I just wanted to put my hands on my ears and not listen, but I knew I had to. She proceeded to tell me she had been diagnosed with something called MDS (Myelodysplastic Syndrome). I knew I had heard that term before and then remembered that the news anchor, Robin Roberts, had a very public battle with that very same disease. Still I did not know much about it. Apparently Janet had been feeling “rundown” for quite some time, attributing it to anemia, since she had had that before. She figured she’d bring it up to the doctor eventually. On her many excursions to foreign countries, she had not really paid attention to the huffing and puffing she encountered while walking up stairs, and doing routine things. So, who knows how long this was going on—it could’ve been for years. But when she got home from her extended stay overseas, she made a routine blood work appointment to get her thyroid medication checked. When she came back in for the results, her doctor noticed certain blood levels seemed very abnormal, unrelated to the thyroid. He kept looking at the lab results and Janet began to wonder what was going on. He tried to play it off, but told her some levels were abnormal and he was sending her immediately to a hematologist.
That was very alarming to say the least. At that point, she knew something dire was suspected and she tried to get some answers out of him but he just told her he was referring her to the hematologist that very day. It was not his job to guess.

Gun Violence

Every time there is gun violence, and innocent people are killed, the police search for a “motive”. I always find myself yelling at the TV that there probably is no motive, at least one we can understand. If you speak to the shooter (if they are still alive) their explanation makes sense only to them. I’m not talking about a family dispute–I’m talking about random, mass killings of total strangers. In the case of the Sandy Hook shootings, I was just as horrified as the next person, and my heart ached for those beautiful children and their families, but I couldn’t help wonder what sort of grief and shame Adam Lanza’s family felt too. I do place lots of blame on his mother for making poor choices with her decision to buy him an assault weapon. When you hear that he had his windows blacked out and only communicated with Mom by email, I am sickened. I ask myself “why did she not get him help?”, and I don’t really know. Maybe she was doing the best she could, and maybe she did try over and over to get him hospitalized. That I do not know, and her decision to give her mentally disturbed son guns may have been her way to connect with him. Unfortunately that cost her her life as well as twenty-six innocent people. What I do know from my own experience is that it is amazingly difficult to get a loved one mental health care, no less hospitalized. It is a travesty that after entering a psychiatric unit, a patient is summarily dumped out in the street to fend for themselves, to wander homeless. The shrinks give them a cursory interview and if they are shrewd–like most paranoid schizophrenics are–and appear “normal”, they are released. This happens over and over. So, who’s to say that this woman did not try to get him help?

Mental Illness and Violence

It amazes me how really ignorant the average person is about mental illness. Unfortunately school shootings, mall shootings, movie theatre shootings, etc. has become the norm rather than the exception. The people who perpetrate the violence are most certainly mentally ill, but people don’t realize that the majority of mentally ill people are NOT violent. In the case of the movie theatre shooting in Aurora, Co, I knew immediately that James Holmes was most certainly suffering from paranoid schizophrenia, based on what he did and his overall dazed appearance. I am not condoning what he did, and my heart breaks for the victims, but I couldn’t help but feel sorrow for him as well–especially his parents. I can’t help but cringe when I hear the comments from bystanders that are frankly born out of shear ignorance. One woman commented that he could not have been mentally ill because of the elaborate planning that went into the ultimate shooting. They just don’t know that the hallmark of paranoid schizophrenia is the appearance of normalcy and the ability to carry out complicated plans. I know this first hand from my son. There are many different types of schizophrenia—some, where the person does appear disordered and unable to carry out basic life skills. But, paranoid schizophrenics often appear “normal” and unless you know them personally, you may miss the signs. Often their inner demons of persecution and their personal torture is well hidden, except during a psychotic break. Unfortunately, there is so much misinformation and prejudice concerning the mentally ill, that people are often characterized as “evil” when in reality they are suffering, running from non-existent enemies, fearing for their very life.