Three years ago I posted the thoughts shared in the devotional book, Streams in the Desert:
Last week I had my regularly scheduled IV infusion of Herceptin, one of the toxic-yet-amazing tools used in the treatment of the cancer identified one year ago today. During that appointment I had a productive conversation with the nurse which I will relate in a bit – the nurses who are trained and experienced in oncology IV treatments are quite a resource….such resources are best drawn on when the awareness of the one coming to take is met by the readiness of the one ready to give, in this case, IV/Oncology Nurse Carol. We had a wonderful meeting on Tuesday.
When the 33 radiation treatments ended in early February I was glad to be told by the radiation oncologist that I would begin feeling distinctively better in a couple of weeks as recovery from radiation fatigue got under way. But there was an OOPS. Feeling distinctively better didn’t happen. At all.
By the end of February I was pretty curious as to why I actually felt worse, weaker. Turns out it is due to my heart being damaged by the treatments. I found the documentation for the damage in the printouts of the echo cardiogram results I’ve been having for a year. Who knew…….
Researching the amazing chemo products….so now I had the motivation and time to carefully read the pages ‘n pages of materials I was given last June (2016) when chemo started.
The information regarding Doxirubicin, Taxol, Perjeta, and Herceptin had been quietly waiting on a clipboard until such a day when I would ask the question to which they provided the answer.
Note: I’m summarizing my findings/understandings here regarding what is actually happening in my life these days. This is not intended to be an exhaustive or professional evaluation of these treatments. These are things I have learned and experienced re this treatment in my case. These treatments are amazing and in addition to killing the cancer, they damage the body. Some of that damage is permanent and some of it is temporary. The treatment carries several different price tags, not all of which are paid early on – some of the payments occur months and years out.
Both Doxirubicin and Herceptin can and often do cause heart damage, sometimes temporary, sometimes permanent, sometimes terminal. The damage caused while Herceptin is being given usually begins to reverse itself when the treatment is complete. Sometimes it doesn’t.
Their strategic use of the word usually reminds me of a phrase I heard on three different occasions, about one year ago:
When the biopsy confirmed that the item identified in the ultrasound after the mammogram was indeed malignant the doc said to me, “This is treatable.”
The surgeon who provided consultation prior to the MRI said, “This is treatable.”
When I was referred to the oncologist for six months of chemo (after the MRI revealed it was a bit more complicated than anticipated) one of her first statements was, “This is treatable.”
By that time, I was tempted to laugh at the line: it was beginning to sound like something a used car salesman would say but I realized it was probably too early in the relationship to expect that my laughter would be understood.
Yes. It’s treatable.
…..until it’s not??
Technically, each of them was telling the truth, but it’s a meme.
It’s a meme.
The cancer industry has lots of memes….and that is not a hostile statement or a bitter remark: it’s just the truth.
I have great relationships with all five of my oncologists and the countless technicians I have dealt with over the past year in cardiology, radiology, imagery, surgery, etc. I have tested my Meme Identification Skills with them by asking them if I’m correct about the memes. They say I am.
They always express interest and appreciation that a patient is willing to recognize and talk about the limits and costs of the situation…..limits and costs that are not verbalized unless the patient asks.
Remember, they won’t tell you anything you don’t know enough to ask
~counsel shared with me by my brother~
Bear in mind – the patient doesn’t have to ask. If you don’t want to know, you will not be made to know. If knowing seems too frightening, no problem; but if you do want to know, understand that you will need to ask.
I had a conversation about that with one of the radiation oncologists in January and asked him, “Is it true that you won’t tell me anything I don’t know enough to ask about?”
CONTEXT: Please keep in mind that I asked this question within our relationship: I did not spring it on him or try to trap him. I had built a relationship with him and therefore he understood that I was asking because I wanted to understand. Believe me – it is not necessary to trick oncologists into doing their best for you or me – they are the most highly motivated docs I’ve ever dealt with.
Well, in answer to my question he chuckled and said, “Oh, absolutely. And then….”, he continued, “…we also have the problem of those who demand information when they really don’t want it. I had a patient who always demanded every detail and when I shared the details, she would fall apart and would then require an additional thirty minutes of being put back together again…..”
I’m not telling it very well, but please understand that the oncologist never knows what the patient really wants until both of them figure it out and that can be a costly process.
The patient bears a responsibility for asking, for knowing how and what to ask, and for processing the information that is provided.
Endurance is not a feeling
Endurance is a very, very useful choice. It needs to be made with wisdom and with thoughtfulness.
My choice to endure a situation or further information about the situation is mine to make. Christianity allows for the reality of human weakness and fear. More than that, it requires that we leave off non-reality, pretense and illusion. But contrary to the fearful suspicions of our shaken hearts, it also asserts that reality itself does not have the power to dilute or distort the grace of God. (excerpt from linked 4/36/13 MBOB above)
Choosing to endure is a faith choice (see Hebrews 11 and take into consideration all the background of each person mentioned in Hebrews 11).
God’s grace and the potential for our engagement with life is provided in the context of reality – not some theological rose garden.