Tuesday, May 1, 2012


What a simple word, yet extremely difficult to achieve on any sort of a regular basis. It does not come easily, at least not for me. It encompasses something as little as waiting for a traffic light to turn green, waiting for your loved one to return home from war, and in my current situation… waiting for insurance to approve a medical procedure that I need to hopefully stop the new metastatic tumors in my liver from progressing further. The specialist told me to prepare for a long wait, possibly 4 to 5 weeks as all insurance is cutting back on approvals for this procedure because of cost, and yes because I have advanced cancer with poor prognosis. Medicine, and getting what might help, as well as many aspects of life, are not black and white, not a certainty, and cannot be predetermined. Everything is weighed and judged.  I understand this now more than ever.  There are limits and decisions to be made, but knowing that, doesn’t lessen the stress on ones’ patience. Only we can lessen the stress for ourselves by not wasting the time we have to spend waiting.

Patience is such a wide subject, that I will limit this post to just part of my cancer journey, the most recent few months (dealing with the new liver mets). I had considered having a mastectomy one year into my journey, but when I was told it would not change my prognosis, and not being fond of surgery, I dropped it. In December, since there were few chemo options left, and I no longer wanted to live with the extreme side effects, my oncologists and I discussed that if my pet scan showed the cancer only in my breast, that it would be a good time to discuss the mastectomy option. I had initially considered a mastectomy earlier because, well, I am odd, and so is my cancer. There are so many variables with cancer, but this specific reaction I had is rare. Usually when cancer has metastasized (spread to another part of the body from the original tumor), if the cancer responds to chemotherapy, it does so in the original tumor faster than in the mets. I was opposite even the first time through chemotherapy five years ago. So after this oddity repeating a few times over the last couple of years, as well as it progressing in the breast first, rather than the mets, my current oncologists agreed that in my weird situation that a mastectomy might be worth a try, to slow the progression.  There is no scientific data on rare situations because, well, because they are “rare” and how do you study a large group of people if a large group does not exist. Mind, scans can only detect cancer if it is something like 5mm in size. So having a clean scan was also not a sure thing, but would be a good sign that the timing was right.

Now on to the PET/CT scans, not good news, it detected uptake in the liver and suggested I have an MRI to confirm. Well this put the mastectomy on the back burner, if it was continuing to progress, and in new organs, why go through surgery. But then in January when I had the abdominal MRI, rather than the usual pet scan, nothing was detected in the liver. I am thinking miracle! (I didn’t usually have MRIs and didn’t realize that it could “not see” it.

So, now it was on to scheduling the mastectomy the end of February.  Then, one month after the mastectomy, it was time for another PET/CT scan, which is basically every three months when you are progressing and for a while after being stable or regressing. So guess what? Masses were detected again in the liver, bigger and more aggressive than in December. Why the MRI did not pick it up, I don’t know for certain. The two scans use different technologies to detect cancer. Maybe because I have inflammatory breast cancer, which grows in sheets before in becomes a tumor (at least in the breast). So what next, I could dwell on having had the mast and all it’s complications, when I was not going to have it, had I known there were indeed liver mets. But it was done and could not be undone.

Next, onto another Doctor, a radiology oncologist in Baltimore. The procedure I was hoping for (yes I did a little internet research beforehand), with the least side effects and less intrusive, was no longer an option, as one of the tumors was now over the size that is compatible with this technique. Surgery is not a good option as the 3 tumors are in completely different areas, including both the right and left lobe, and I imagine recovery would be difficult even if the surgery was possible. So I wait, wait for approval from medicare and my medigap insurance for the best , if not only option for me. Then If approved, I will have a test to make certain I am a candidate for the procedure, a basic mapping of the main artery that goes to the liver, to make certain there aren’t branches (?) or other situations that would make this technique possible. And, all the while, I don’t know if the tumors are growing, most likely though.

I did start on another non-chemo medication, because, the pathology report based on the mastectomy tissue did determine the hormonal aspects of my cancer had changed since my first biopsy five years ago. So maybe the mastectomy was not a waste after all??? I know most if not all things happen for a reason. Maybe God intervened so to speak so that the tumors would not be detected on the MRI so that I would go ahead with the mastectomy. Why, how, when really don’t matter now, as they are done, in the past, etc..

Anyway, back to the “having patience” topic. I cannot do anything about this wait, any more than I can most of the time. If I spend all my time worrying about it, I waste more than a month of my life, and at this point I have realized that each and every day is precious. So I continue, march on, as if there is no end in sight. As we all should, as we don’t really know when the end will come. I actually have been given a gift, so to speak, knowing how precious this month is, and to live it larger than ever… No, not wasteful, or diving out of planes J, but living for God, for my family, church, friends, neighbors, strangers. Every day and every act is important. No, I am not a saint, and I have “mental” medications that help as well, but it has been drilled into me over and over during the last five years, that living the life of a victim, giving up, is not living.

So today, when my daughter and her two glorious kids (some of my special earth-angels) visited, I actually made dinner. Nothing special and most of it was done while sitting in my scooter, but it felt good to accomplish something. It feels so much better than a few days ago when I wasted an entire day with the blahs watching movies. AND my evening ended with lots of hugs and love. What could be better!

Tell someone you love them today! And try to have patience… the alternative only hurts you, …well most of the time, there are always exceptions. J

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