Back in 1997 when I was 38, I was running Kaleidoscapes, my Internet Consulting business. As a Polio survivor with numerous disabilities, working from home was ideal for me. Mostly it consisted of creating and managing a very successful online homeschooling forum for families all over the world, but I also did some CGI programming on the side, such as helping Louis Volpe, who owns and runs Holidays on the Net (www.holidays.net). During this time I was homeschooling my two kids who were six and nine. In December of that year I was diagnosed with breast cancer. I had been scheduled to undergo surgery to remove the 'ductal carcinoma in situ' or DCIS (which by definition means it has not spread) as it had been diagnosed by Dr. Sheehan at the time--based on my mammogram images--although he never bothered to check nearby lymph nodes for signs it had metastasized. Incidentally, during Dr.Sheehan’s biopsy he dropped the needle he was using onto his nurse’s hand, breaking her skin and prompting him to strongly suggest that I have an HIV test to make sure his nurse hadn’t been infected. My results were negative for HIV, of course. But his clumsiness gave me pause about continuing to work with him; and when he wanted to do a complete mastectomy, that I felt was overkill since the DCIS (supposedly) hadn't spread, I decided to go with a different doctor.
Since I preferred not to have the mastectomy, within a week I had found my second doctor, Dr. Nims, who had a practice in Columbus. He agreed to do a wide excision, which is similar to a lumpectomy and meant I would get to keep much of my breast. However, in the days leading up to the surgery I had been noticing a tingling in my armpit, and just as I was about to be anesthetized for the wide excision, I asked Dr. Nims to check it out. Sure enough, the cancer had spread to my lymph nodes. Rather than completing the excision, they took a biopsy of one of the grape-sized lumps and discovered that, indeed, the DCIS had spread and it instantly became a Stage IIIA cancer. Dr. Nims recommended that I go through chemotherapy first to kill the cancer, and then they would perform the wide excision and remove some lymph nodes at the same time to make sure it was destroyed and wouldn't spread further.
Dr. Nims referred me to a doctor in Findlay, which was much closer than Columbus for the chemotherapy. The first time I met with the guy I’ll call Dr. P (short for Poopyhead, because that’s what he was), I got a very bad feeling. I wanted to start the chemotherapy as soon as possible, but Dr. P refused to begin my treatments until I submitted to a full body bone scan. I felt that it was a waste of time, and would only expose me to additional radiation, but he refused to start the chemotherapy unless I caved to his demands. I desperately wanted to start the chemo treatments as soon as possible, so I agreed. The tests showed that the cancer had not spread to my bones (as I expected), but that my bones were “riddled with osteoporosis” according to Dr. P. I wasn’t surprised by this diagnosis, as Polio had led to much atrophy of my muscles as well as my bones.
Even after I had the unnecessary bone scan, Dr. P continued to add stipulations before I could get the remaining 2 treatments, and denied me the right to have any opinion in the matter. So finally, with many, many tears, I wrote a letter to a female chemotherapist in Dr. P’s office to see if I could get my remaining treatments from her. She responded and told me that Dr. P would not allow it, with the reasoning that if she were to become sick on a day when I needed one of my treatments, Dr. P would be forced to administer it, and he felt there was too much animosity between us for that to be successful.
Since Dr. P would not allow me to be treated by anyone else at his facility, I called Dr. Nims and told him that I needed a new chemotherapist. He said that it was a bad idea to switch doctors mid-treatment, but I told him I had no choice, I simply couldn't believe that Dr. P had my best interests in mind. Not that he would have deliberately tried to cause me harm, but I couldn't even count on him to go the extra mile for me. Or even the extra “let someone else in your office treat me” for me.
Dr. Nims sent me to Dr. Rhoades, at the OSU hospital in Columbus. One of the very first things that I remember Dr. Rhoades saying to me was, 'your chemo dosage is set too high. I'm going to lower your remaining two doses.' That sounded fantastic to me because I was having an excruciating time coping with the first treatment. In addition to the vomiting, hair loss, and overwhelming depression, I was also having periodic uncontrollable spasms in my chest, stomach, and back that made me feel as if I was being crushed in a vise. I described the pain to Dr. Rhoades, but he said he hadn't heard of anyone experiencing that before as a result of chemo, but that he believed the lower doses could help.
The lower dosages did help, and I eventually got through the other two treatments and the wide excision, plus the removal of sixteen of my lymph nodes. This showed that the cancer had only spread to two nodes and no further. The surgery was followed by numerous weeks of radiation treatments.
But back to Dr. Rhoades and what he did for me. I didn't realize at that time that he had saved my life, or at the very least made it livable, but I do understand more (and how he did it) now. It turns out that Post-Polio Syndrome (PPS) victims like me, because of the degenerative nature of our disease, sometimes can't tolerate normal amounts of drugs/treatments like other people and so we should be given significantly lower doses. I'll briefly describe PPS here as it pertained to my own case, but a better overview can be found at Wikipedia. My own case of Polio in 1961 was a paralytic attack, causing me to be paralyzed from the neck down. I recovered, for the most part, except that the muscles in my left leg from above the knee on down to my toes are useless and shriveled, forcing me to wear a brace to compensate. In addition, my right foot also requires a brace and both of my arms are weaker than a normal person's--but still usable. My recovery from the initial paralysis involved my body sprouting new nerve cells where the diseased Polio nerve cells were destroyed. In a nutshell, when PPS strikes, the new nerve cells that sprouted during recovery from the original Polio infection die off, and then there are no more nerve cells available to replace the second set. Thus, PPS victims often end up weakened to the point of paralysis again. I fear that that is probably what will happen to me, although honestly, a few weeks ago I was a total basket case when I thought about not being able to recover when all of my second set of 'sprouted' cells die off. It petrifies me to think about all the healthy cells I'm losing in the process of being treated for cancer, because that is the nature of chemo and radiation—the treatments kill off healthy cells right along with the cancer cells. I conveyed my concerns to Dr. Rhoades and he allayed many of my fears. He explained that I'm getting much lower doses of Cisplatin this time, and it won't do nearly as much damage to my body as the cancer treatments I had fourteen years ago did. Speaking of my earlier treatments, I now realize how deeply fortunate I was to have found Dr. Rhoades. He had the courage to challenge another doctor’s orders and adjust them accordingly. Had I stayed with Dr. P in Findlay, many more of my precious few 'sprouted' cells would have been destroyed and perhaps I would have been rendered paralyzed back then. Or worse, if my PPS-ravaged body couldn't find the strength to recover from the harsh chemo treatments, I very well might have died back in 1998 or 1999.
Furthermore, I also found out much later about one other cruel side effect of high doses of chemo treatments, such as those that Dr. P was giving me. That is, Post Chemotherapy Cognitive Impairment, or as most victims call it, Chemo Brain or Chemo Fog. I'm not going to delve into my experience with Chemo Brain too much except to say that before I knew what it was, I was convinced that I was losing my mind because of the confusion and nearly constant forgetfulness. I actually thought back then that I had Mad Cow Disease and didn't believe I'd be around too many more years. If you want to learn a little more about how I've come to cope with the Chemo Brain, you can read it online here.
Anyway, back to what was going on with my breast cancer treatments. Had I received the last two EXTREMELY high doses of chemo from Dr. P, my brain might have been too scrambled for recovery. So on many levels, I am forever grateful to Dr. Rhoades for his brilliant catch of Dr. P's chemo doses that were set entirely too high for me, and Dr. Rhoades' keen audacity to lower them. What’s astonishing is, I didn't realize until just recently—during the process of being diagnosed with this second cancer—exactly how lucky I was, and am. It's like learning I won the lottery fourteen years ago by being treated by Dr. Rhoades, only better, since my 'jackpot' is my life, and those winnings have finally caught up with me.
Even though that sounds like a happy ending, there's more! You can read Part 2 HERE.
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