Friday, January 26, 2007

Friday, January 26, 2007

A new direction for me this morning.
After writing my thoughts out last night, CC and I had a pretty significant talk regarding our individual views regarding what’s going on. As much as the fact that being flexible is not a gift of mine, I realized that the time is now for me to step further forward than I want to; to adopt a perspective uncomfortable and unpredictable to my normalcy.
My mother in law, Nana, is no longer capable of self care and independence. One of us must be home with her at all times now, due to the progression of and the condition of the bone cancer within her. Bone cancer eats away at the marrow of the bone (think termite and wood) and as it eats, it takes the calcium from the bones and slowly (or quickly if in the higher stages) distributes the calcium into the blood stream. This thickens the blood and thus, slows the travel of the blood through the body and brain, this forces the heart to work harder than it should or sometimes can and it blurs the brain’s ingestion of the nutrients and necessary bodies the blood is to carry to and from the brain.
Does your brain hurt yet…?

Her brain is not receiving the blood supply fast enough or pure enough, so it is slowly beginning to malfunction. Also, since the cancer is progressively eating away again, the bone pain is increasing. For several months now, she has refused to eat much food or drink much liquid, regardless of the strategies we would try, which is why she eventually ends up in the hospital for dehydration. She appears to understand what that is and why it happens, but does not think it will happen to her or she just is going to do what she’s going to do and she’ll tell you to leave her alone. Been there with her.
I understood last night that I must step into a caregiver role and frame of mind now, being that “things” have changed so significantly. Being a caregiver is a natural role for CC; a gift she flows in effortlessly. That’s not to say she has no problems in it or that the caregiving itself is easy. Anyone in the medical profession will tell you that caregiving is exhausting, non-stop, unrelenting and stressful. What I’m saying regarding CC, is that she understands the whole thing, pretty much in its entirety, and does it as if she’d already been through Med School with a straight A’s for grades. I, on the other hand, am often all thumbs when it comes to that disposition and further frustrating; I’m transparent in my lack of skill. Good thing is that I’m a damn quick study and I can acclimate in a pretty short period of time.
It’s difficult to care for someone when you yourself, don’t feel good. I’m sure that’s not new news for anyone and it’s rather basic, but it is the truth in a simple view. My responsibility now is to focus my energies between my care, my future, and the daily household responsibilities as well as Nana’s care and her state of health during any time that CC’s either not home or focused on a task which would take her full attention. There is another doc appointment for her within a week, I believe, and it will likely be a significant appointment; discussing her very recent past, current cancer progression and outlook/estimate, as well as addressing the level of her self care and accelerated health care and attention. I hope and expect that the whole topic of not eating/drinking will be addressed, but I also believe that the core issue there is depression, more than not.

Next.

Okay, as I went to bed last night, I took with me the printed out lab stats and notes from what appears to be 2005 and 2006. It’s possible that they go back as early as 2001, but I have not seen any from that time yet in my reading. As I scanned my way through several pages of lab numbers from the latter part of 2006, I came across the dictations of the treating physicians from my admissions and from my ER visits as well! Also found was the Neurologist’s notes from my visit with him in Walnut Creek! Specifically in that collection of information, he noted that I had tested negative for the 3 known HKPP gene mutations. Again, and I know that I’ve addressed this topic before, but let’s hit it again for clarity’s sake, shall we? Here are the facts: the three mutations that Kaiser searches for are calcium channel mutations; R528H, R1239H and R1239G. In fact, 14 mutations have been identified so far and not just in calcium channels, but also in sodium and potassium channels as well. Now, it must be noted that ALL hospitals and medical facilities are only searching for the three calcium channel mutations, not just Kaiser, which is a global frustration for those of *us* who are living with this condition known as HKPP. After reading his note to that regard, I KNEW that was a significant factor in his decision to oppose Dr. Iyengar’s diagnosis. From my “tiffany” view, in a world of rare and unusual conditions, symptoms and ideas must be combined in order to figure out the underlying issue(s) and be used in the inevitable conclusion which should be considered a diagnosis. The Walnut Creek neurologist does not want to consider multiple diagnoses for me, so he then must rule out one of the two proposed diagnoses, even if I have symptoms which suggest more than one issue at hand. He stated that I had “negative gene testing which excludes that consideration for three-fourths of patients.” I will be articulate and concise and will now sum up my reaction and response to his conclusion: bullshit. He concludes his dictation with this: “As he has only just recently started the spirinolactone and been doing better, I think it is reasonable not to rush into any next decision making.”
I am, of course, a bit more angry right now having just read it again, but you know, he’ll only know if I die from another attack if…:
1. he was to read about it in a newspaper article about a 43 year old man who died from a strange disease and he then thinks, “oh shit. He really did have multiple diagnoses."
2. my wife and family sue him, the hospital and the ER staff for their negligence and inevitable contribution to my death.

Okay, mellowing out now.
Reading his notes helps me understand why the whole process came to a stand still. He suggested it should and he thinks it’s unnecessary to move quickly in my care and investigation of my symptoms and condition.
It is time to be deliberate, intentional and correct in my (our) actions as we go forward. It’s time to be specific and move forward, legally, medically and morally.

I’ll be seeing about contacting the same law firm that we used back when we were dealing with our landlord from Fair Oaks, whose head began to spin around toward the end of our rental stay, but I digress…The law firm was based online and is out of Los Angeles and is apparently quite large and diversified with several branches handling different focuses of law. We need a couple of those now in our life and the charge is a monthly charge, if I remember correctly.
Knowing that Kaiser is intentionally not moving forward is a very important piece of information and enables us to address their Member Services Department in an informed manner with facts, not just feelings of frustration.

I talked to God all the way to the hospital yesterday; during the drive, during my waling through the garage, while I was in the elevator and silently when near or around anyone else in the vicinity, and I expressed my frustrations and hopes, my fears and concerns, my thoughts and perspectives and I asked for His intervention into this entire mess with my care at Kaiser and MetLife. I believe that the person in Member Services who gave me the free printed report (they aren’t allowed to print reports for patients) and who gave me the direct line to the supervisor in the Medical Secretaries offices did so because of His influence. And the supervisor in the Medical Secretaries office, who faxed a new document (one that should have been faxed but apparently was requested somewhere between the different departments) to MetLife and re-faxed the original document (she’s not to intervene in a task has been given to a secretary, that secretary and only that secretary can handle that paperwork) also did so at His influence.

Having this report gives us the doctors' own thoughts and perspectives in their own words.

Please continue your prayers for me and for us.
He is listening and moving in His ways and times and it will only be through Him that this whole process resolves.
CC’s exhausted. Please pray specifically for her.

Until I write again…