Sunday, September 30, 2012

The Fight Begins...But What, Exactly, Is the Foe?

Over the past five days, I have learned that it is likely I have some form of cancer related to my bone marrow's production of blood cells. At this point, the only people who know are immediate adult family members on my side and Noelle's, Noelle's best friend, my boss, and our bishop. We will wait to spread the word to our children and others until we have a definitive diagnosis and a plan for treatment. In the mean time and beyond, I will write in this blog the goings-on and my thoughts and feelings about the journey I and my family are about to undertake.

I will include below the text of the emails I sent to my and Noelle's family members on Wednesday and Saturday to inform them of what we knew at the time, edited to include a couple additional details.

Hello, family.

I write this to you, hoping that you will understand that the information I am about to share with you is to remain confidential to immediate adult family members of Noelle and I until further notice. Please respect Noelle's and my wishes in that regard. The information I am about to share with you has not even been shared with our own children. Please don't share any of this with your non-adult children until further notice, either. Thank you for honoring our wishes.

Some of you know that over the past five weeks, I've had a handful of moderate injuries to various parts of my torso, all of which have come with no direct trauma to the affected areas, other than, twisting, turning or bending in ways that my body didn't like. (The first was a broken rib or torn muscle at the bottom of the right side of my ribcage, which happened as I was cleaning out our basement-level window wells. The second was a strained or torn left pectoral muscle that happened in my sleep two weeks later. The third, about a week after that...) Well, one of the injuries was to my left shoulder, causing severe pain and a severe decrease in strength and range of motion. We were pretty sure it was a muscular injury, and not structural, but went in to get it checked out. After being sent by a family practitioner to an orthopedist (joint specialist), it was determined that it would be best to have an MRI taken to ensure that there was no structural damage in either the bones or ligaments. Much to my chagrin, I had that MRI done last Saturday (Sept 22, the morning after I had a rib injury identical to the first in pain level and location, only on the left side).

Yesterday (Tues, Sept 25), I called the orthopedist to cancel my follow-up appointment, as the shoulder is feeling better every day and I've regained about 30-40% of my strength and range of motion, and I didn't want to go in and pay another big co-pay just to be told it would heal on its own. The specialist said that while there was no structural damage he could see from my injury, he wanted me to come in this morning anyway. He wanted me to get some blood work done. He told me he found (and confirmed with his radiologist) "bone marrow changes" and "quite a lot of it" in "every bone we could see," the humerus, the clavicle, the shoulder blade, etc. He is ordering another set of MRI scans to add to the information found with the blood work "to rule out lymphoma."

The most common causes of bone marrow changes are lymphoma (cancer), leukemia (cancer) and a couple kinds of anemia (not cancer, but could lead to cancer). I haven't shown any definitive symptoms of any of those 3 diseases, though, so we're in a wait-and-see situation. The results of my blood work should be back to my doctor no later than Friday, so we should have some more information for you then. 

Right now, Noelle and I just want you all to know what we're facing. We are managing our concerns and fears as well as can be expected. We would appreciate any prayers you might send up in our behalf. We have both received priesthood blessings (thank you, Dave and Jeff), which have provided us with a good amount of comfort. I will be fasting tomorrow (Thursday), and on most Sundays until we get this resolved. If you would care to join me at any time, I'm sure it will help. If you have any questions, please let me know and I'll answer them to whatever degree allowed by the information I have at the time.

Thank you all for your love.

John

So, that's what I sent out on Wednesday night. Yesterday (Saturday) morning, I sent out the following:

Hello, everyone.

Here's an update, now that we have something more to share...

The feedback I received from my orthopedist (Dr. Ben Hansen), who ordered my blood work, is that my white blood cell count is abnormally high and that the pathology is abnormal. Because he's an orthopedist and not an oncologist, Dr. Hansen was unwilling to offer any kind of diagnosis, but referred me to a hematologist/oncologist for a review of the results and a consultation. After spending a good part of the day yesterday working with people in 3 different practices, I finally secured an appointment with the same doctor that Jeff and Rachelle's former bishop works with for his Leukemia.

The white blood cell condition present in my blood is called 'lymphocytosis' and simply means that I've got 'a proliferation (or rapid increase in the number) of white blood cells.' So, while that may not be the disease that's causing it, it's a name...a label. There are several tests to be done to confirm it, but signs are pointing to my having Leukemia of one kind or another. If it's a form of 'T-cell' Leukemia, chances of it responding well to treatment are low. If it's a form of 'B-cell' Leukemia, survival rates are high, and in some cases, treatment doesn't even interfere that heavily with the patient's day-to-day activities. We need to cheer on those B-cells. =0)

My first appointment with my hematologist/oncologist (blood/cancer doctor), Dr. Richard Frame, is set for 5:00pm this coming Thursday, October 4th. As I mentioned before, if you have any questions, concerns, or would just like to talk, give me a call (801-699-0084). We're in generally good spirits. We still haven't said anything to the children and are debating whether to share what we know with them this weekend or next, after we have a more definitive diagnosis. Please keep us all in your thoughts and prayers.

With much love and gratitude for my amazing family,

John

So, there you have it. Noelle is trying to be strong, but I know she's struggling, having lost both of her parents to degenerative diseases, and now feeling that she might lose me way too early, as well. I don't feel like I have struggled much with this, perhaps because at this point I don't yet know what we're looking at. The diagnosis will tell us much of what is to be expected for treatment, quality of life during treatment, chances for remission, survival and life expectancy rates. What I do know, and what has been a tremendous comfort to me over the past several days, is that in the Patriarchal Blessing I received over 27 years ago, my Father in Heaven made me many promises predicated upon my faithfulness, which I am working hard to keep in tact. Several of those promises have yet to be fulfilled. Great blessings yet lie in store for me and my family, and I trust God when He speaks. I have much yet to do; of that I am sure. I am reminded of the Lord's words which came to the prophet Joseph Smith, Jr., while he was incarcerated in Liberty, MO in 1839: "Therefore, hold on thy way, and the priesthood shall remain with thee... Thy days are known, and thy years shall not be numbered less; therefore, fear not..., for God shall be with you forever and ever" (D&C 122:9).

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