Forest Service Sign seen on a hiking trail:
Warning – Extreme Hazard – No Water, No Shade, No Cell Service
HMMM?
This past month I listened to an online seminar concerning Multiple Myeloma (MM) and for me the prominent take away was that there sure is a lot to be worried about when traveling the MM journey. While it was a somewhat technical presentation, in my mind it came across as a bit scary. I know that cancer is not to be taken lightly. However, after listening to the seminar, I wondered how I am still breathing. There is sooo much to be concerned with regarding the path we are on.
Typically, I would not listen to an online seminar about MM. I do not know as to where my indifference to these MM webinars comes from other than to write that maybe some “ignorance” truly is bliss.
As mentioned previously, during the very first meeting I had with my MM oncologist 10 years ago, he stressed that I should not put too much importance into data and power-point presentations regarding MM because that data did not include information about my specific situation. He was very clear in explaining that each person’s disease is very personal.
It was explained that all treatments/protocols would proceed forward based upon information that had been gathered from others. However, he wanted me to understand that just because something did/did not work for someone else does not guarantee a similar result for me.
He cautioned me about putting too much faith in other people’s results. The RESULTS of the treatments that would follow could only be guessed at (an educated guess that is for sure).
Living/Moving forward with cancer is a very uncertain proposition. And even though with MM many have had wonderful results, some have not. Survival rates are rising, however, there are just very few guarantees in life. New treatments have been wonderfully effective in managing the disease. And the existing cancer research environment is developing new and more effective means in trying to manage the disease while helping a patient maintain a desired quality of life.
So much is being done for us. And in most instances, it is being done so as we “sleep.”
He made it clear that cancer treatment is not like fixing a broken arm. A somewhat proper descriptor may be that at this time, there is art integrated with science when trying to manage this incurable disease.
Now, if I may, I would like to take us back to the online seminar and the unease that I felt when it was over.
If the goal of the online seminar was to make the listener “feel better” well, I can tell you that for me it failed. The presentation did not say at any point “Mark we got this, you are going to be ok;” Charts and graphs about cell structure, an impossibly large number of abbreviations and extremely long words/complicated verbiage provides no comfort. And I sort of like comfort.
I look to my oncologist for most of the information I accept about MM. I am interested in my treatments but God-forbid if I am forced to understand and evaluate what treatments would be best for me. That is for the oncologist.
I have little idea (even after listening to the webinar) as to the nature of my cells and how some things attach to other things resulting in too much of this and that which leads to an increase of X and decrease of Z all of which can cause problems that may or may not be “in play” within my body.
This post is not about hammering webinars and seminars relating to MM. Maybe, very gently, what I am trying to write is that sometimes, you just must trust the people who you have entrusted with your condition. Individuals who will do their best in mapping out the journey. Sometimes you must be satisfied with not knowing and with what happens next.
What I am most interested in when evaluating and accepting my situation is:
What is my existing condition and what kind of prognosis can be estimated for my survival?
Are the treatments going to hurt?
What I can expect for my quality of life given a great, good, medium, or not so good response to treatments.
And that is about it. That is what I am most concerned about as I travel forward. Assessing/grasping all the information about cell structure, light chains, monoclonal peak, etc, etc. etc is frankly way over my level of understanding.
Life in general is hazardous and risky. Adding MM/cancer to the recipe certainly makes it more so. Accepting my lack of control over certain situations, trusting others and being aware of/comfortable with the acceptance of risk usually means the days will be calmer with less worry.
And then sometimes, you find yourself without cell service.
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