9th Chemo Treatment, The Autoimmune Epidemic & The Autoimmune Disease Summit

March 5th, 201010:23 pm @ Angela Odom


Whew, now that’s a mouthful. Yes indeed I am going to combine three posts in one because I’ve got chemo brain and I can’t stay focused. Well no, actually, all of this came together in one day during chemo.

Today was my day to sit in a chair and look stupid for a couple of hours. First, I had to talk with my chemo doctor, have him examine me and I felt the need to ask a question about my pain and if there was a relationship with the chemo. Well, there is, somewhat.

He told me that approximately two weeks after receiving chemo, bone marrow production spikes. The effects on bone marrow can begin about 7 days after each treatment and usually goes back to normal after about 21 to 28 days. According to him, I may feel some pain in those 21 to 28 days but, he said the chemo may not be the total cause of my pain. Fibromyalgia is another problem associated with lupus and then there is the reduction in prednisone too.

Okay, question asked and answered and off I went to the sitting room for my Afternoon Tea, from a hanging bag.

I have found that getting it in the hand is better than getting it in the arm. It just flows better. Apparently, with all of my nervous energy, I gotta be starting something like playing around with a laptop or reading a book. This time I decided to read a book and the book I chose to read was the Autoimmune Epidemic by Donna Jackson Nakazawa. I had high hopes of finishing this book today but the subject matter is so intense I have found myself pausing throughout to make notes — the book is completely marked up — and do research which is why I usually have a laptop with me. More on that later.

I will admit I’m a strange bird. Midway through chemo, as always, I want to eat a whole horse. This is not the stuff I heard from friends who suffered through chemo for cancer or others who went through chemo for lupus. They have all told me they were sick to their stomachs, felt extreme fatigue afterward, had some pain, and hung out the “leave me alone” sign. Not only that, I always want to drink an ocean. Again, unheard of from those who have been there done that.

I don’t know why this is and as usual, I headed out to feast and drink at will. I have had slight nausea but no vomiting. Not once. As they say, it takes all kinds and I’m one of those that may be a bit unusual.

I must also add, this being my 9th chemo treatment, I have had no infections. This was a very big deal. You can’t see me doing this but I’m knocking wood like a woodpecker right now.

Lastly, and I’m just going to be as frank as I can, the one unusual thing I’ve noticed and I prepare for it every time I go in for chemo is . . . I’ll call it No. 2. In a word, prolific. Maybe not one end but certainly the other and that’s all I’ll say about that.

Getting back to Autoimmune Epidemic by Donna Jackson Nakazawa, if you have not purchased this book I suggest you do so. Whether you have an autoimmune disease or know someone who does, it is important reading because it is my belief the next big surge of illnesses to come will be autoimmune illnesses. You will be amazed at how something you think is nothing could actually become something you never want to think about, ever.

What was absolutely amazing was the connection made with heart disease and autoimmune illnesses. I thought that initially — particularly after my diagnosis — because it was something I experienced early on, while in my 20s. I have also found many folks I know who were diagnosed with cancer also reported test results showing high cholesterol. This was the first red flag I noticed when I was finally able to see a complete CBC. Though my doctor dismissed the findings of my blood test to be nothing more than needing to prescribe a statin for my extremely high cholesterol and ibuprofen for all of the inflammation he saw (“you have arthritis” he said), I knew something sinister was taking place in my body so I changed doctors quickly.

There is no half-stepping in this book. It is well written with lots-o-resources and she talks to numerous people about their fight with autoimmune disease. She also documents her experiences with Gillian Barre Syndrome — twice she’s had it.

LIFE image of DDT sprayed from a TIFA (Todd Insecticidal Fog Applicator) around model Kay Heffernon to supposedly demonstrate it won't contaminate her food (a hot dog and coke), Jones Beach, New York. Wonder how she managed years later and did she have children

At the beginning, she talks about some of the environmental triggers as well. Of note for me was DDT. My mother and I had a discussion about the book and the mention of DDT. Of course, my mother wants to read this book as well and I’m debating whether I should give her mine or order her a new one. Mine has been marked up considerably. My mother is very concerned about the DDT because — as a child and through the time she was a young adult — she picked cotton, beans, name it she picked it and all of this was done, at times, while being sprayed with DDT. Could this be the smoking gun in my life and perhaps some of my relatives and/or sorors and frats? Who knows.

At this point in my life I really don’t care how I got it or why, what really matters to me now is how I can live with it. I do find it interesting only from the perspective of how to eliminate this chemical — which, though it was banned, still exists in soil and fish — and others — like the stuff in plastic bottles, insecticides, pesticides, etc.. Scientists have found, when testing children, adults and even the umbilical cord of newborns, a lot of very dangerous chemicals are coming up in the blood. I have seen this repeatedly on many health and science shows but never had I seen these chemicals could possibly change or tax your immune system to the point of causing autoimmune diseases.

Of course, where you find big business you will also find what I call The Prostitutes, those scientists that will say or do whatever you want them to say or do. Hey, they got to make a living doing something. Unfortunately, this has affected most professions these days. I am not surprised big business hires some of these folks to tell the world there is no correlation and they’re products are safe. Of course they are, they need to make money too. Thankfully, people are looking into the effects of these chemicals on our system and thankfully, in Nakazawa’s book, you get to read some of these findings.

Again, for me, I’m not concerned about the history of why I have lupus; however, I am concerned about the young couple who may have a cute little baby who starts life on dialysis with monster medical bills. These drugs ain’t cheap and don’t think Benlysta, when it hits the market, will be cheap either. I’m sure they won’t have a generic form of that drug for a long while.

The book is fabulous and she covers the gamut. Your head will spin, I assure you.

Now, having waxed on about Autoimmune Epidemic by Donna Jackson Nakazawa, she was at the Autoimmune Disease Summit this week and my prayers were answered. The summit was recorded and the webcast is now online. You and I can spend the day, hours, whatever time we have, at our leisure watching the entire day of talks. Check it out because they had a number of excellent speakers and AARDA’s ground breaking report examining the current state of autoimmune disease (AD) and its economic and social impact globally and in the U.S. was released at the National Autoimmune Diseases Summit.

I have only watched the first video but hopefully — if this is weekend proves to be rainy — I will get through all of them this weekend.

Tags:  Autoimmune, Books, Chemo, DDT