Friday, January 23, 2009

What's Real and What's Not Real

Let me see if I can explain my extreme frustration. I haven't been all that successful with a great many people in my life. I think Dr. Miller gets some of it, but he has his set of beliefs and I have mine.

This discussion has been remarkably similar to trying to discuss politics with the "headline readers". I passionately believe certain things about politics, America, right and wrong. Before I profer an opinion, I generally try to educate myself on the matter first. I get extremely frustrated with people who counter my opinions with superficial comments.

For example, Gitmo. There are people who reflexively say "We should close Gitmo." or the current favorite "Obama is closing Gitmo." The majority of people who say this, in my experience, are parroting the words of others. They aren't really familiar with the workings of Gitmo, the legal decisions that created the current situation and the facts on the ground. When you question them, they can't back up their opinions. I get frustrated. I want to convey to them all the pieces of the puzzle that they are missing. Because I think if they just had the facts.........

That's how I feel about multiple myeloma and chemo.

I say there is nothing wrong with me and people nod. Are you really listening? I don't have any tumors. I don't have any bony lesions. I don't have kidney problems. Nothing, not one blessed thing.

I get sympathetic nods and comments of "Well you were caught early." Really? Who says? How do you know I haven't been percolating this for a while? These numbers are fairly high. A normal person's IGA measures between 70 and 350. I have read dozens and dozens of accounts from and about patients who have IGA levels between 700 or so and 2000 and are experiencing horrible manifestations of myeloma. My numbers have ranged from 3310 to 5948. Based on numbers alone, this doesn't sound early to me.

Or I get "Let's treat now because it's easier before you become symptomatic?" Really? Who says? My fatigue is less debilitating because I've never broken a bone? My insomnia is more tolerable because my kidneys function? Also, why is no one considering the trade-off? Maybe it is easier now, maybe it isn't - but for sure I am trading actual quality of life right now for a possible benefit later.

Plus, who says those things are coming my way AT ALL? Because that's the normal course of this disease? Well we all know how well Maggie adheres the norm, don't we?

"Multiple myeloma (also known as myeloma or plasma cell myeloma) is a progressive hematologic (blood) disease." Really? Mine has not progressed in ANY way since June and in the myeloma world, that's a long time. As a matter of fact my June number (5948) dropped on it's own with no outside influence to 4940 in August.

"Hypercalcemia, anemia, renal damage, increased susceptibility to bacterial infection, and impaired production of normal immunoglobulin are common clinical manifestations of multiple myeloma. It is often also characterized by diffuse osteoporosis, usually in the pelvis, spine, ribs, and skull." Really? Not one of these things are present in my case. Nor is there any sign that they are on the horizon. Did I tell you how difficult it was for Dr. Hochstin to do my bone marrow biopsy? Yeah because my bones are in such good shape it took a great deal of effort to punch through. And during my va-cay at the Jordan last week there were all kinds of X-Rays and CT scans. Things are still fine. No symptoms.

During the IMF Conference I participated in back in November, they told us that "Revlimid/ld Dex produces a durable response in 92% of patients." Really? Not me.

"The average age at diagnosis is 62 years for men and 61 years for women" Really? I am 47.

My point? My case hasn't followed one single rule or fullfilled one single expectation of this diagnosis. Why must I believe it will progress to being symptromatic?

What if this is all it was ever going to be? An anomaly in my blood work. Who is to say that if I had a less thorough primary care physician, I would not have walked around for the next ten or twenty years fat, dumb and happy? What if my crazy flucuating numbers are merely my body's adaptation to chemical exposure in my youth? I played down the Oilies and I was exposed to an unbelievable amount of stuff. They dumped everything under the sun in the Mystic River basin. The housing project next to the Oilies is classified by the Feds as a "cancer cluster".

Everything that I have been told about multiple myeloma and me, is supposition.

Now let's get to what's real.

Chemo has caused real problems.

Chemo has had real consequences.

One of the potential consequences of steroid use is elevated blood sugar and I have it. One of the consequences of elevated blood sugar is heart disease. Therefore to fight the possible cancer, I have caused a real problem with possible fatal consequences.

Another potential consequence of steroid use is peripheral neuropathy. Of course, they told me that it usually presents much further into treatment (again, my condition is not following the norm) and is possibly reversible. Every morning when I wake up there is some degree of numbness and tingling in my hands, arms feet or legs. That's real. Laying there waiting for it to subside it is very real. Glasses breaking as they slip out of my hands in the sink is very real. the mild ache that remains is a reminder all day of how very real it is. Therefore to fight the possible cancer, I have caused a real problem with possible lifelong debilitating consequences.

Despite taking my lisinopril faithfully, my blood pressure yesterday was 151 over 90 something. There's another very real consequence of chemo. Before my diagnosis my blood pressure normally ran around the 125 over the low 80s.


Anonymous said...


I've seen you out on ACOR, so know you are getting some info from there. I don't tend to post on there unless I have specific info I need or want to give an individual person some encouragement. Since I know you from here, I wanted to answer you here (trying to get into social community stuff a bit).

My philosophy is pretty akin to what you are talking about -- this is about me!

When I was diagnosed, I had swollen fingers due to the cold. Something I had experienced for over 20 years with no diagnosis of anything. My PCP took some blood tests and, lo and behold, I got the diagnosis of stage 1 mm.

After a bunch of tests and talking to folks, I ended up at Dana Farber with Dr. Schlossman (whom we have discussed before). I went about a year getting monthly Zometa (due to diffuse osteopenia -- my bones are taking a hit from this), but when my IGA hit 2600 in December 2005, Dr. S. suggested some treatment as I was borderline "stage 2".

I opted for (did not feel at all coerced) thalomide/dex. Numbers slowly went down (supposedly a good sign -- slow movement shows "indolence" a good thing), but never hit "normal". I had chemo brain, manic dex days and peripheral neuropathy developing (the latter being non-reversible per all medical literature). So, when the PN started, I noted I wasn't comfortable with things. It was totally left up to me as to what to do.

I chose to stop everything after about 3 months (interestingly, the dex swelling of my legs started the week I made the decision to stop -- I would not have continued once that occurred in any case). In May it will be 3 years with my only treatment the zometa (which at 2 years I asked to be reduced to every other month due to its' "half life" and possible ONJ per the ACOR list and other literature).

My IGA has been rising (again slowly) since I stopped the thal/dex. Right now it is about the 2600 that I started treatment at the last time. But, it has been there for about 6 months. My blood counts have been slowly going down as well, but I am not yet too anemic (which will definitely be my call as well).

Bottom line: I am enjoying my life. The mm isn't affecting my daily activities and I am monitoring things. If the effects of the MM become such that I am unhappier not treating it, then treating it, I will do so.

If you are feeling fine and all your tests are fine, and you are being monitored....seems to me you get to choose when you want treatment. There aren't enough studies/statistics to say there is a "right thing" to do.

sgttoby (posting as anonymous as I don't remember my password for blogger....not chemo brain, just old brain)

BostonMaggie said...

Well there's a vote for dropping everything and just monitoring my situation.

What are you doing Sunday? Maybe you could come over to my Dad's house and help me make my case.

Anonymous said...

I would very much like to meet you some day. This weekend, I am off to enjoy my QOL with the man I adore. Raincheck?

BostonMaggie said...


Have a fabulous weekend!