The Pressure to Parent

Probably the worst part about receiving the diagnosis of a terminal, life shortening disease is the pressure I feel to try to be the best, most effective parent I can to my two daughters.  Yes, Amy is 28 and Claire is almost 17 and a lot of the "heavy-duty" stuff is done but I feel they're both getting to the ages where I can help them the most.

I've helped and mentored a number of young women in my career and have always enjoyed it and felt like I'm pretty good at helping them figure out when to make a job change, have a tough conversation productively, improve work relationships, balance work and family...topics like that.  From what my friends and "mentees" tell me, I have a really good ability to frame up the choices people are facing and organize the factors they should consider so they can make an informed decision.

Just last week I had such a rewarding phone call with a former co-worker who is considering a job change and we talked through the pros and cons, how it fit into her longer term career and family goals, and how and when she should share with her boss.  I really get a lot of satisfaction from those conversations and see it as a way I can use my analytical mind, that can drive people who know me well crazy at times, to help others.

I've had the opportunity to do this with Amy some over the last few years as she's started her career and think I've helped her out with some sticky situations at work and the impact they've had at home.  It's been great to be able to invest that skill in the success and happiness of one of my children.

Claire is at that age where parents are not at the top of the list of sources for good advice.  Plus, she's always needed to have a clear view into the direct return on engaging in any activity.  I've had the chance to help her figure out how to be a better teammate on her sports teams and productively deal with personalities that she finds challenging (ie irritating...and that's a lot of personalities.  She doesn't suffer fools easily.)  But there's so much more I feel I need to teach her about how to be a happy, balanced woman and it pisses me off that this disease might take that opportunity away.

Alan and I have been working almost continuously with Claire on the need to do the things people in authority over her expect of her, even if she doesn't see the benefit.  Right now, those things are Alan and I wanting her to be better organized, manage her time better...just develop the habits and practices that help her keep up with the increasing demands of college and a career.  She's been pretty resistant because she doesn't see how it will help her now.

She and I had a great discussion about her resistance last night.  I told her that when we tell her to do things, she needs to trust that we have her best interests at heart.  I pointed out she wants us to trust her in situations where we don't have all the details we'd like and we are pretty accommodating of that.  I told her she shows her respect and trust of us when she does the things we ask even if she doesn't clearly see or believe there will be a benefit.

It was a great discussion.  She never disagreed or got defensive and could clearly see the validity in my perspective.  She's got a tough outer shell that rejects anything weak or irrelevant and I've gotten pretty effective at getting past it.

Not having THESE ^^ moments with my daughters is what pisses me off, and frankly scares me the most, about the single-digit lifespan that many patients with this disease experience.  Now, I've met folks who are 20 years out from their diagnosis, too, but there's no way of knowing where I'll fall on the bell curve--short tail, middle or long tail.  I cried a lot while I pondered this, not out of fear or anger but just sadness over what this might mean.

This insecurity about being around to guide them causes me to over-react when I think something is interfering with my ability to play an active role in guiding them.  I'm getting better but it's somewhat insidious and many times I only recognize it in retrospect.  

The bottom line is that I need to trust God and do my best to stay in the moment without worrying about what I expected in the past or what the future might bring.  That living in the moment, the "I AM", seems to be the foundation of so many of the world's religions.  I saw this on the blog of a fellow cancer patient who was talking about the struggle to deal with the daily fear this diagnosis brings.  She shared this photo.

Daily, I read the "Litany and Novenas to Saint Faustina" that were given to me by John Reiner of Oakland Nursery last summer.  He said it was part of the regimen he used to beat stage IV colon cancer that had metastasized to his liver.  http://www.dispatch.com/content/stories/local/2012/10/28/to-your-health/nutrition-plays-role-in-prevention-treatment.html  I'm doing great at following his spiritual instruction, I'm still not as good at following his nutritional advice that he shared here  Nutrition Confusion but I'm trying. 

Last night, it said, "Saint Faustina, obtain for me the grace of a childlike trust in the Lord God who can do all things.  He is Wisdom itself and loves with an everlasting love."

So, whether it's the guidance of The Bible, Taoism, Saint Faustina, or a modified version of what I shared with Claire, I need to continue to trust that God has my best interests at heart and live in the moment.

THAT is the only way I know for me to have a happy life...regardless of how long that life is. 

Unblinded with science

I've spent a lot of time since I was diagnosed trying to understand this disease from a purely intellectual perspective.  My general interest in science, two semesters of biology, one semester of anatomy, three semesters of chemistry, three years doing media relations for a teaching hospital and 15 years in the field of data and analytics give me enough of a base that I can understand a good majority of the articles and studies that I read.  Well, good majority for someone not in the science or healthcare field.  I'm still working to understand more...I remember b cells and t cells and plasma cells and cytokines and antibodies from my biology classes but it wasn't in as much depth and/or I didn't sufficiently synthesize the information to provide antyhing more than a shaky foundation upon which I can build a real understanding of my current disease process.

As my friend Judy (PhD in Statistics, analytics professional extraordinaire and breast cancer survivor)  said to me last fall when talking about this need to understand the disease and research, "Cancer is my hobby."  I read a lot and go on internet wanders to fill in the missing gaps in my understanding.  Whenever I've had the opportunity to validate my understanding with someone more knowledgable than me, I usually get it right...conceptually at least.

Two things crossed my media stream over the last few weeks that really smacked me in the face with why this disease, and most cancers, are so freaking hard to beat.  It would be reasonable to think that this realization would upset me and perhaps make me depressed but my need to understand is greater than my fear of my disease.  I was almost giddy when I figured this out.  I'm going to talk a little about what I've figured out and whenever I make what seems like a statement of scientific fact, just know there's an asterisk after it followed by "as far as I know" or "from what I understand".  I recognize I could be off on a lot of this.

Now, some of the information is related to Multiple Myeloma, not AL Amyloidosis and those of you who have been around a while remember my struggle about whether or not I have MM or Smoldering MM.  I discussed it in "The Real Slim Shady and Multiple Myeloma".  If I don't have MM or SMM, then I don't have cancer.  AL Amyloidosis is not cancer.  Which sorta pisses me off sometimes because when you say "cancer" people almost immediately understand this could be really bad.  You don't get that reaction when you say AL Amyloidosis, or "rare, incurable blood disorder that's fatal if left untreated."  AND, the 2 diseases basically start out the same with a plasma cell clone that goes haywire and starts causing problems.

(There's a whole class of diseases from those haywire plasma cells called "plasma cell dyscrasias".  Dyscrasia is just a fancy medical word for when something in your body doesn't work right.  I think I might start using dyscrasia as a euphemism for "effed up.")

The difference between MM and AL is in the mechanism of death.  Cancer causes death by the damage from the proliferation of the cancer cells.  In AL, we start off with the same process that might eventually develop into MM, but if it doesn't develop into MM, we die from the organ failure that's caused by the misfolding of a by-product of that plasma cell clone going haywire.  A technicality, if you ask me.

This story from the NPR show RadioLab about Famous Tumors really helped me understand the progression of cancer and the challenges in developing effective long-term treatments or cures.  Here's the relevant excerpt (about 12:40-15:30 in the show)--http://youtu.be/cVrNOkKoQW0  I like to listen to RadioLab or This American Life when I'm driving solo.  I listened to this a few weeks ago as I drove for an hour to meet Alan for the TOSRV ride.  As I listened to it, I wondered if this was the same mechanism that happens in multiple myeloma.  It would seem that it would be, but I'm never sure about anything with this crazy class of diseases.  I shared this clip with my 16-year-old daughter and she said, "It's just like Darwin's theory of natural selection."  Exactly...which takes me to this article that came in my email several days later from an Amyloid listserv to which I belong.

The article, "The impact of intra-clonal heterogeneity on the treatment of multiple myeloma" starts off with this--

 It is clear that cancers comprise a mixture of clones, a feature termed intra-clonal heterogeneity, that compete for spatial and nutritional resources in a fashion that leads to disease progression and therapy resistance. This process of competition resembles the schema proposed by Darwin to explain the origin of the species, and applying these evolutionary biology concepts to cancer has the potential to improve our treatment strategies.

Exactly the process described in the Radiolab show and identified by Claire.  This picture from the article effectively demonstrates the challenge in finding effective treatments because, as they noted in the RadioLab story,  "it sounds like cancer is always evolving to be more cancerous."  And if that's true for cancer cells that originate in something like lung tissue, it blows my mind to think of how quickly cells could evolve that start in your immune system.  I mean that system is programmed to produce cell differences so it can fight never before encountered pathogens. Hijack that system for evil purposes and you've got something pretty powerful. (Since originally writing this, I've learned that the "anatomical" perspective of cancer is outdated and that the future of cancer research and treatment is to approach it from a genomic and immunologic perspective.  So, I'm striking that statement because I'm not sure if it's accurate.  Seems like bad cancer is bad cancer regardless of where it manifests itself.)

Think about it...it would be hard enough to come up with an effective treatment that wiped out all the gray cells in the diagram above. That's the single cell theory in the RadioLab show (what they really describe in the RadioLab show would be more accurately described as the single type of cell theory.)   But, the gray cells evolve into gray cells with horizontal stripes and right angle stripes and those two evolve into gray cells with boxes and gray cells with arches.  As Dr. Hofmeister noted in the Imagine Mmore Multiple Myeloma Symposium, a cure will come when they can find the "queen termite" the original plasma cell clone that started all the mess.  When they can get rid of that, then all the copying and all the errors and mayhem that follow will cease.  And that is called a cure.

Now, for those of us with AL Amyloidosis, we have hope on two fronts.  Researchers can find and eliminate the queen termite.  OR, and this is a benefit from this disease not being a cancer, researchers can figure out how to keep the plasma cell by-product (free light chains) from mis-folding and clogging up our organs.  (Although I have heard there's a toxic effect from the elevated free light chains whether or not they mis-fold so keep looking for that queen termite, guys and gals.). There's an article starting on page 11 of the Boston University Medical Center magazine about research they're doing in that area.  http://www.bumc.bu.edu/comm/files/2014/04/Spring-2014.pdf

The Amyloidosis info starts on page 19.  David Seldin, MD, PhD, professor of medicine and microbiology and director of the Amyloidosis Center said in the article that even though different disease processes can produce mis-folded proteins that turn into amyloids, the amyloids all look identical microscopically so there must be something similar in the way that they are formed.  There's a whole group of diseases caused by mis-folded proteins: Alzheimer's, Parkinson's (my maternal grandmother had both of those), type 2 diabetes and Amyloidosis.  Isn't that great--I get to be in the plasma cell dyscrasia club AND the protein misfolding disorder club.  Actually, it is good because advances in treating either class of disorder might help in treating my disease.

So, while I could look at this newfound understanding as bad news, its really not new news,  I knew it was bad, I've seen pretty scary relapse numbers (~96%), the words from Dr. Hofmeister's database documentation ("Because nearly all amyloid and myeloma patients relapse and treatment is eventually unsuccessful...") is burned into my mind.  What I've learned through this isn't new info for me.  But, I do feel I've had a breakthrough in my understanding which will help me as I continue to learn about this to satisfy my intellectual curiosity and to feed my need to understand the world around me.  And it's confirmed my sense that I don't really need to worry about what those tater tots will do to my cholesterol nor be uber-diligent about the sunscreen.

I'm sure this learning process will go on as long as I'm able to do it.  I'm still working to get through the Immunology course from UMass that I've downloaded on iTunesU.  Who knows what mind-blowing understanding that might bring into my world.

Again, just another opportunity to trust God. I know He has a plan for me and I just need to be faithful and follow it.  Regardless of how wacky my plasma cells are or how poorly my proteins are folded. So I can learn about these topics, but I don't have to worry about them.