Friday, October 2, 2009

Mr. Hunstman Done Did Well For Himself!

Have you SEEN Huntsman Cancer Institute?  What a place!  Jon Sr. made his millions when he was in the right place at the right time and manufactured the styrofoam clamshell container for McDonald's for the Big Mac.  Has done a lot of other things, of course, but that's what got him going.  Now I'm told he's dropped hundreds of millions of dollars into HCI.  GOOD FOR HIM!  Beats folks who've done well and don't do anything for their fellow man.

I could argue that less mahogany trim and the decor would translate into more treatment for patients, but I digress.  Jon deserves to do this place up top
notch, and he's done so in spades.  YOU DONE DID WELL MR. H!

So, I'll update ya'll on my first appointment with Dr. Glenn in just a moment, but I have to share an irony that wasn't lost on me when I was there yesterday.

Lisa and I were waiting in the lobby for Barry to park his car and come in, so I ran to the restroom.  As I was coming out, I was transported back to June 20th when I was coming out of that same restroom after having ridden 140 miles from Delta, UT to HCI.  This was part of Jeff Warren's annual "Reno to HCI" fundraiser in which he raises millions (OK, maybe not that much, but some good scratch) for HCI.  On June 20th I was at HCI helping bring Jeff in, and supporting him as he raised money for HCI.  Fast forward 13 days and I get hit by a car, find out I have enlarged lypmh nodes, and start the process that brings me back full circle.  You can call it irony...I know it's something else!

Now, on to what happened yesterday in my first appointment as an official "cancer patient":

I'll quote from the Lymphoma Research Foundation in BOLD, as opposed to my thoughts in regular type. Just so you can keep score...

  • From Lymphoma Research Foundation; "Although some NHLs are localized to one area, most are found in other parts of the body by the time he diagnosis is confirmed." So, that just confirms to me if mine is localized and we're able to irradiate it that we're even more blessed by The Lord. THIS IS WHAT I WOULD ASK ANY AND ALL WHO ARE INTERESTED IN DOING TO PRAY FOR BETWEEN NOW AND TUESDAY. LOCALIZED WILL GIVE US SOME OPTIONS. GENERALIZED WILL NOT.

  • From LRF, "A second opinion is not considered adequate unless the tumor sample is reviewed by another pathologist, preferably well versed in lymphoma." My cancer is a "low grade" (based on the size of the cells relative one to another). Grade 3 is "aggressive", grade 1 is "low grade", or the medical term is "indolent". Grade 2 is in the middle. Ogden Regional graded it a 2, Huntsman graded it a 1. I'm going with grade 1, not because it sounds better, or is better, but because that's Huntsman's grading, and I'm trusting 100% in them. From LRF, "The grade classification is important because it affects both the rate at which the disease is likely to progress and the treatments likely to be effective."

  • From LRF, "A PET scan evaluates NHL activity in different parts of the body. To perform a test, a radioactive glucose tracer substance is first injected. A positron camera is then used to detect the radioactivity and produce cross-sectional images of the body. PET scans are very useful in determining response to treatment. While CAT scans show the size of a lymph node, PET scans show if the lymph node is active (still has the disease). Next week we have a PET/CT scan scheduled. It will tell us if the lymphoma is in any other areas of my body or not. Right now it's just in the lymph nodes in the back of my abdomen.

  • If it turns out that's the only place it is (medical term is localized), then they'll test my bone marrow. If it's not there, which it probably isn't based on my blood tests and blood count which is normal, then they will ask the radiological oncologists if they can/will irradiate the area. From LRF, "Bone marrow is obtained by numbing the skin, tissue and surface of the bone with local anesthetic, inserting a thin needle into the pelvis or another large bone and withdrawing a small sample. The procedure can be painful at the moment when the marrow is withdrawn." Regarding radiation therapy, "Radiation therapy is a local therapy which means it only affects cancer cells in the treated area. Radiation is sometimes used alone for certain localized lymphomas, either nodal or extranodal, or may be combined with chemotherapy.

  • Here's where it gets interesting- although low grade follicular lymphomas are normally curable, if it's localized and gets irradiated, it may get "cured". Go figure. From LRF, "Low-grade of indolent lymphomas tend to grow very slowly and need treatment less urgently. Indolent lymphomas, although usually exquisite to therapy are rarely cured. Despite this, patients often live for a long time with a good quality of life. Some indolent lymphomas can transform over time into more aggressive types requiring more intensive treatment. Although people with more aggressive lymphomas often require more immediate intensive treatment, their cancers may be curable. Indolent lymphomas that transform into more aggressive types are more difficult to cure.

  • From LRF, "Patients with NHL that has spread outside the lymph nodes to other organs such as the bone marrow or nervous system tend to have lower cure rates compared to those whose disease has not spread.

  • From LRF, "In patients with NHL, levels of lactate dehydrogenase (LDH) are commonly measured, because higher levels suggest that the lymphoma may be more aggressive and that more intensive treatment may be needed." They also drew blood yesterday to run an LDH test. I should get the results of this test next Thursday when I get the PET scan results.

  • From LRF, "Follicular lymphoma which is spread (generalized) in the vast majority of patients, is very responsive to treatment but is not curable. If localized, however, follicular lymphoma can often remain dormant for years or decades, with minimal treatment. THAT'S WHAT WE MAY BE LOOKING AT, AND WHY WE SHOULD HAVE HOPE!

  • Indolent follicular lymphomas don't really have a cure. From LRF, "Indolent NHLs tend to reappear, even after long term remission."

  • From LRF, "People under the age of 60 generally have better outcomes than those who are older. Those who are more active tend to respond better than those who aren't."

  • From LRF, "Watchful waiting is a term used when a patient is diagnosed with NHL is not given any immediate treatment for the lymphoma. The patient pursues a normal life as long as symptoms of NHL aren't present. The patient has regular physician visits and follow-up evaluation procedures, such as laboratory tests and diagnostic imaging. Watchful waiting is an appropriate treatment for some patients with follicular or other indolent lymphomas, but is genially not appropriate for aggressive lymphoma. When the patient begins to notice symptoms, or when there are signs that the disease is progressing, watchful waiting will be abandoned and more active treatment will be initiated. The patient is placed under "watchful waiting" (medical term, not something I made up) and basically until any strong symptoms of lymphoma present (drastic weight loss, itching, fatigue, flu-like symptoms, etc.) they don't treat with chemo, as the side effects of chemo are undesirable, and can actually be worse than the symptoms at times.

  • Aggressive follicular lymphomas can be cured, but they also require more immediate attention and treatment, and are also more risky.

So, I'm stuck with a follicular lymphoma that really isn't aggressive, and is more of a "watch and wait", but may never be cured. It may relapse and remit throughout the rest of my life.
Net-net after 24 hours of reflection, thought and prayer- this is a blessing.  I have cancer- I'll get over that!  It's not aggressive, that's a good thing.  It's possibly localized, and can perhaps be irradiated.  WAHOO!  No matter what, I'm not letting this thing get me, and I'm going to fight, fight, fight.  As I've said before, "Bring it!"
Much love...

1 comment:

  1. Be sure to try the food. My mother-in-law spent some time there; we offered to take dinner to her and my father-in-law (he was at home). Both declined, instead wanting to eat at HCC. When cancer is cured, that will be a nice hotel. Stay positive.