Not the Best of Days
News
Moffitt Cancer Center is, I think, a typical research
hospital. Meaning it’s about the science, not creating a healing environment.
Basically, when you’re the best, and know it, and people have no choice, you
don’t have to treat them well, just treat their disease. Too bad for me, I
forgot Step 3 of my own advice (Page 7-8 of my book). “You are in charge.” When
we left Moffitt last Monday, they owed me three things: Results of my needle
biopsy; a teleconference with the clinical trials coordinator, and an
appointment with my transplant doctor. I waited all week for any of the three
to happen. Finally, on Friday, I called Dr. Sotomayor’s nurse and left a
message about these things.
Yesterday late afternoon, she called back. She
apologized I’d heard nothing, let me know she’d get hold of the clinical trials
nurse, and casually dropped the biopsy results on me. Unfortunately, it is
confirmed as relapsed MCL. A number of people including Sandy had been praying
for “not cancer at all.” I sort of had my head in the place where it would be
another, more treatable or less urgent kind. Well, we don’t always get what we
want, to quote a famous old rock song.
She also is going to contact the transplant doctor again to
try to get them to call me to set up an appointment. We had VERY poor
experiences with that department last time, as far as scheduling, making calls,
follow up, etc. so I don’t expect much this time.
Late that afternoon, the clinical trials nurse called. She
said she’d left a message on our phone last Tuesday. Well, we did have a missed
call on the Caller I.D., but no message. She couldn’t talk to me then, but we
will talk Monday about clinical trial options.
So, had I started calling on Wednesday instead of waiting
until Friday, I’d have the info needed on clinical trials already, my
appointment scheduled, and would have the weekend to consider and plan.
Message: YOU ARE IN CHARGE OF YOUR DISEASE. Don’t wait for
them, press them to respond to you.
The Science of
Cancer
So, what is cancer anyway? There are lots of web sites out
there to explain. Here’s my analogy, followed by some “real” science. Cancer is
basically domestic terrorism. The body’s own cells turn against it. Instead of
quietly moving into a nice neighborhood, reproducing, and dying like good little
citizens, they become warped, live long and breed more terrorists, and muscle
in on everyone else’s business, spreading hate and discontent. They’re hard to find, and darned hard to kill.
Something in a cell’s DNA goes whack, letting it become very
prolific and unspecialized, as well as disabling the mechanism that
self-regulates and ages it. So they grow like crazy, spread around other parts
of the body, and interfere with the functioning of the organs they grow in.
Lymphoma is one of the three major types of “Blood Cancers”,
along with Leukemia and Myeloma. Lymphoma starts, unimaginatively, in the lymph
system, which is WAY more spread around the body than you’d think. We’re using
to prodding our necks, maybe under the armpit, and sometimes in our groin, when
we have an infection, so see if the nodes are swollen. Turns out they also run
through our torso, upper thighs, etc. Since the lymph system filters blood, it’s
pretty common for cancer to spread into the bone marrow, which is where the
stem cells that become blood cells are born. This is why, what used to be
called a “Bone Marrow Transplant” and actually involved swapping marrow around,
is now called a “Stem Cell Transplant” and is done by filtering stem cells
(immature blood cells) out of the donor’s blood, and putting them in the recipient
through an I.V. It’s also why you hardly ever have any Stage of lymphoma other
than 4, total body. Hard to catch just one lymph node before it’s spread the
bad guys into the blood stream.
Is the LRF’s page on MCL. If you’re going to support a blood
cancer organization, I feel this provides MUCH better bang for the buck than
the Leukemia & Lymphoma Society. LRF is all about putting money into
researching cures and supporting scientists. L&L does GREAT work supporting
patients and families, and raises tons of money and awareness, and I bless and
thank the people involved. I just think the LRF has a laser focus on curing the
disease.
Zen and the Art of
Living With Cancer
The best thing about having cancer: hearing all the nice
things people think about you without having to attend your own funeral! Last
time, and now this time, it’s humbling and uplifting to find out I matter to
other people, and they feel knowing me is a positive thing. Since I figured
this out, I try to make an effort to be more open about letting people know
they are important to me, that I’m impressed with them as they are, and telling
other people positive things about them.
So, instead of just doing this with people who are sick
and/or dying, why not tell ALL your friends and loved ones, regularly, how you
feel about them? What a nice way to live your life, openly praising and being
praised. Lesson learned.
Horrible Terrible
Cancer Jokes in Bad Taste
WARNING:
37% of people will think I’m a terrible person for posting these. The other 63%
will KNOW I’m terrible! I strongly recommend you don’t read these!
This stinker courtesy of my BCB (best cancer buddy) Kurt.
A guy goes to the doctor with advanced cancer. Doctor says, “Well,
I think the best thing for you to do is go to a spa and take a mud bath every
day.” Patient: “Will this cure my cancer?” Doc: “No, but it will get you used
to the feeling of dirt.”
I warned you.
God Bless all of you who are praying, calling, emailing, and
otherwise supporting us.
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