Battling the Sharks

I have many phrases that I use to keep myself emotionally grounded.  Some of these are not likely to be statements that others would find helpful:  "It is not a problem until it is a biopsy confirmed problem," comes most immediately to mind.  However, "Battle the shark closest to the boat" might be useful in a more general context than my friend Mallory originally intended.With LFS, we have to be thoughtful about things that most people never consider, including our approach to cancer.  The decision about whether to submit to high dose radiation treatment is angst ridden. (Equally difficult, are thoughts about radiation exposure  prior to knowing LFS status, which prompts this helpful bit of advice: "Do your best with the information at hand, and don't look back.") When mutants talk about tough decisions though, it usually comes down to the phrase "battle the shark closest to the boat."  This sort of distills the cost/benefit analysis into very simple terms.When we first learned about LFS, long before I was connected with anyone else who had it, or understood much about it, we went to NYC with my son for a limb salvage surgery, in order to remove his right pelvis for osteosarcoma.  During his extended recovery there, there was concern about the possibility of pneumonia at one point.  They wanted to get a chest x-ray, which we initially declined.  We knew that with LFS, radiation exposure should be avoided.Using the shark premise. it really wouldn't matter what the radiation exposure might do to Brent cancer-wise, if a pneumonia was left undiagnosed. Fluid on his lungs was the closest shark.

The same thing applies to radiation therapy in certain cases of cancer, as well as chemotherapy, both of which are DNA toxic, more so in a fragile genetic environment. Clearly, the biggest baddest shark is the cancer that you are currently facing. However, you don't want to throw chum in the water if you can help it...attracting even more, creating a shark party, with a well stocked bar and snacks.

When there are suspicions, PET scans or CT scans can determine if a cancer has returned, or if new one is developing. They each carry a pretty good wallop of radiation.  The value of the information gleaned from these tests must be carefully weighed against the risk of exposure.  The kicker with LFS, is that our suspicion of cancer is higher, as well as the damaging effect of radiation exposure, which is unavoidable for a timely diagnosis.  Sigh...

We just play in a higher stakes game, it would seem.

For the Ramers, of late, it has been bewilderingly difficult to identify the number of sharks lurking, and their location relative to our little boat.  There have been several sharks, and we have dumped some chum into the ocean.  I would like to put a little distance between us and that spill, if you know what I mean.

I am happy to report that the latest dark shadow that we saw as we peered over the edge of our skiff was no shark.  Not that I am looking to keep score, or taunt the cancer gods by noticing, but Brent has won the last two rounds, Leukemia and Lymphoma have been gratefully averted, although not without needles and knives.  ('It is not a problem until it is biopsy confirmed problem' was the mantra that got me through this last week of cancering)

Our little boat has no motor, no oars.  We can only drift away from the spill and hope that the sharks don't follow.

It will just take time.