Pain and advocacy

Today I woke up (as I have most mornings over the past few months) in a lot of pain. I would say that I've gotten used to it, but the funny thing about pain is...you never really get used to it. I once thought it would be like owning a cat in a tiny apartment. Sooner or later, you stop smelling the litter box.

But it's not like that. In fact, it's almost the opposite. The longer the pain goes on, the more intensely you feel it. The more fatigued you are, the less able you are to cope with the pain. And believe me...I am fatigued.

I feel as though everything is happening at once. I am being called upon to advocate in pretty much every single area of my life. I'll try to break it down for you as best I can.

1. My health...You guys know about my proposed surgery and the ramifications of that procedure. If you missed that one, read about it here. Well, I have my consult with the reconstructive surgeon tomorrow morning and I have to be prepared to voice my concerns and questions, which are many. How did I prepare for this? By talking out my anxieties with my therapist and by arranging to bring a support person with me to the appointment. It's always a good idea to have an extra set of ears when you are getting information like this.

2. Truman's home behavioral therapy program... I just got the news last week that they are reducing his hours by one third. Not cool. Especially considering his recent spikes in behaviors and the transition of moving into a new house. Really not cool. And the reason behind this? Well, apparently I am such a "model parent" that they feel I should be running the sessions by myself and that he doesn't need the number of sessions per week he once did. Basically, I've worked so hard at implementing the program that now they feel I can handle it on my own. The problem with this is, that I really CANNOT handle it on my own. I'm freaking out. I'm exhausted, and angry, and frustrated, and scared that Truman's behavior will endanger and/or injure one or the both of us. So I pretty much feel as though I am being punished for being effective. Sucks.

3. Truman's schooling...The new school year begins on August 29th and we STILL don't know where he is going. Yep - still. I keep calling people and speaking with people (his teacher, his former principal, the district office, etc.) and everyone tells me a different story. The teacher says it's up to the district, the principal says it's up to the Director of Special Education, the Director of Special Education says it's up to the principals, the district office says it's up to the IEP team, the IEP team says it's up to the district office and on and on and on. And Truman is a giant hot potato again. Aaargh!!!

4. Our financial support... I have been on federal disability (SSI) since 2006 due to the ravages of cancer and all the myriad treatments that helped save my life. I have been unable to work in all that time. As I began to feel stronger and healthier after losing weight, I decided to try to go back to work. I started a VERY part-time job doing some light office work for a family business. I began in January, but by mid-May I was really struggling with pain. I was having a big resurgence of the lymphedema that is the main source of the pain I experience. I worked a few hours off and on in June and then that was it. I couldn't do any more. This is upsetting and disappointing on many levels. I was excited at the prospect of re-joining the workforce. It was a relief to have a little more income. I felt productive, creative, social, and needed. And then I felt betrayed by the shortcomings of my body. As much as I want to go back to work, I find myself completely unable. DIS-abled in the truest sense of the world. But a few days ago I got a scary letter indicating my disability is up for review. It's basically like applying all over again. I have to fill out reams of paperwork demonstrating the level of my injury and medical problems. The timing is absolutely brilliant. Here I am getting ready to have a major surgery and they're talking about taking away my benefits. Awesome. Could I be any more freaked out?

5.  Truman's auxiliary support... We receive respite care sponsored by the Regional Center for Truman, but his respite care provider is out of the country for the entire month. Also, with his increase in behaviors, my increase in pain and decrease in function, and the change in our housing situation...well, let's just say our needs have changed. Greatly. I feel completely overwhelmed sometimes...okay, most times. I am actively seeking IHSS (In-Home Supportive Services) as well as Protective Supervision for Truman, which would help us to pay for some additional support in the home. But this, as with any bureaucracy, requires an immense amount of paperwork, phone calls, red tape, and WAITING to get lined up. I am told it is worth the trouble in the amount of relief the family receives, but at this point I am having a hard time seeing the up-side. Right now it just looks like a lot more work on an already over-full duty roster.

So those are the highlights. There are other issues of course. Trying to exercise and get enough protein. The battle of the vitamins. Trying to go through boxes of stuff to prepare for our garage sale. Paying bills and keeping a budget. Dishes. Laundry. Dust bunnies. You know...LIFE.

All of this is what I am dealing with right now. Is it any wonder my meds aren't really helping? They say stress can cause pain and pain can cause stress, so I think I am basically caught up in an endless cycle of pain and stress.

Ouroborus, anyone?

Sorry if any of this bums you out. I end this post thinking of Ecclesiastes, Job, and even a little bit of Revelation. Maybe tomorrow I'll be thinking of Psalms.

I can hope, right?

Grace & Peace...

Hannah

Over-sharing...

If you ask any of my friends (my close ones, anyway) they will tell you that I have a tendency to over-share. This is known as TMI (too much information) in my mother's parlance. I don't know why I have this particular foible, but I am not in denial about this. I truly don't have much of a filter. Maybe it comes from a childhood with too many secrets, or an exceptionally gregarious family. Maybe it is simply because I have, according to my dear friend Ryan, a "Billboard Personality"...he describes it like a giant picture of my face and appropriate jazz hands with huge block letters that just say "HI! I'M HANNAH!!!"

All those things are true. But if is this a good or a bad thing, honestly I can't tell. The reason I decided to write this post is because I am having an internal struggle over what and how much to share on this blog about my medical issues. It's a sensitive subject for most people, but I have always been pretty open about my situation. However - it's one thing to be chatting up your girlfriends after church or at a dinner party and reveal some painful details about your personal situation and something all-together different to lay it all out in black & white.

So I'll start slowly and see where we end up.

Most of you know that I had cancer. Some of you might even know what kind I had or (vaguely) what parts of my body were affected. A very few of you have even heard some of the grisly details of precisely how damaged I became through the disease process. Sadly, there are even some of you who have personally witnessed  and helped me care for my wounds. 

But I would venture to say that no one actually understands what cancer has really done to me. In my body, in my mind, my spirit, my emotions...cancer has simply run amok. (Yah, that's really how you spell that. I checked. Weird, huh?) So I guess in my attempt to process what has happened and continues to happen to me I will tend to over-share.

Oh well. If you're easily offended, I guess just don't read the blog.

The impetus for this entry was a reaction to an appointment I had with my Gyn-Onc today. (That's an abbreviation for Gynecologic Oncologist.) His name is Dr. Harrison and while he did not do my actual surgery, he has been in charge of my after-care for the past 5 years. He and his nurse Cathy have been with me through thick and thin and they have helped me to manage my pain and my long-term care with utmost compassion and dedication. In other words...they're awesome!

Well at this appointment, which was supposed to be just my regular 6-month follow-up, I actually broke down and tearfully explained my frustration with the current state of my anatomy. I have had a huge resurgence of pain and swelling in the past few months and I have been fighting daily to manage it. I understand that the lymphedema will be a chronic condition I will have to control for the rest of my life, but the pain and dysfunction was really getting to me.

One of the reasons I elected to have bariatric surgery was in the hope that losing weight would decrease the lymphedema and also help bring the pain under better control. Well, I'm only about 20 pounds from my goal weight and I am not seeing the changes I was hoping for (and frankly, expecting.) The goal was to get enough weight off to safely have reconstructive surgery on the tissues that were damaged by radiation and surgery. But honestly, in my heart of hearts, I hoped that just losing the weight would resolve things enough that I wouldn't need the surgery.

Now I know that is not the case.

So, this is what I am facing.

A Radical Vulvectomy and Abdominoplasty with Gracilis Myocutaneous Flaps.

It looks like this:

Click here if you're interested in the medical details...

I'm not really sure how to feel about that.

If you've never had surgery, especially major elective surgery, you probably are having a hard time relating to this conundrum. Before I had my first surgery I always thought...what's the big deal? Why are they nervous? They knock you out, give you the good drugs...you even get a few days all to yourself to vege out while you recover. No biggie!

WRONG!!!

Surgery is a big deal. It's scary to be unconscious and under the control of total strangers. It's scary to have parts of your body manipulated, removed, discarded, never to be seen again. It's REALLY scary to think that you won't heal properly or in time or that you'll have a complication like some horrible infection or tissue necrosis or something. It is absolutely mortifying to think that you might not make it back home to take care of your baby and your husband.

Most of all, it is terrifying to think that you might go through all that and then have the surgery not work at all. To think that you might still have the pain and dysfunction anyway.

So that's why I felt compelled to write about it.  I'm scared. I have to consider and plan for this reconstruction and my weeks of recovery and I'm kinda pissed that I even need it in the first place.

Come on, God! I thought I was supposed to be healed already! What happened to Your promise? When will my healing really be complete? I don't want to be impatient or even seem ungrateful, but I am seriously OVER this!!! 

I think it's time to bust out my old treatment mantra...Lord, I believe. Help my unbelief. (Mark 9:24)

I know that He is with me through all of this. I'm just tired. And scared. And I feel alone dealing with all this. No one my age should have to handle this much crap. It's just not right. 

But as I said before...God is good. All the time. His provision is ALWAYS sufficient. His timing is mysterious and His ways are not our ways. But we got through this before (more than once!) so I know we can do it again.

Grace & Peace,

-Hannah

Housewarming

To quote one of my all-time favorite movies (Frank Capra's It's A Wonderful Life): "Bread - that this house may never know hunger. Salt - that life may always have flavor. And wine - that joy and prosperity may reign forever! Enter the LaFrenz castle!!!"

So, I know a housewarming party is a somewhat rare occurrence these days. Maybe it's the modern era. Maybe it's the casual California lifestyle. Maybe it's our socio-economic status. Who knows? It's just not something I come across very often. But I love the idea of welcoming everyone into a new home. For someone who expresses the gift of hospitality as passionately as I do, it is somewhat expected. But for Dave and I this event held a particular significance.

Most housewarmings take place when someone purchases their home. Dave and I happen to be renting our current house. We still felt the desire to have a housewarming party. Perhaps if you knew a little bit more about our recent past circumstance, you would understand why.

Dave and I were married on April 24, 2004 and soon after moved to the (accursed) high desert because that's where he got his first teaching job in California. It was a wonderful time for us, even with all the crazy challenges of living in a charming (read: decrepit) old cabin style house in the insane climate of Apple Valley. We built a pleasant routine around his unusual schedule. Because of the un-holy weather of that region, school started and ended early in the day. This meant he was usually home in time for us to run errands in the afternoon, see a matinee, or even (our favorite) take a nap before making dinner. It was just him, me, and Warren

 (my Australian Shepherd mix who was my constant companion and boogie-man repellant.) We did lots of little home improvement projects and yard work type stuff. We really made an effort to make that place our own. And it was...warts and all. I can honestly say those first few months of our marriage were one of the happiest times of my life. They call it the "honeymoon" period for a reason.

But the abbreviation of that idyllic time was shattered not by the typical growing pains of a new relationship, but instead by the stress of a surprise pregnancy which included a very painful medical mystery. By the time we reached our first anniversary I was finishing up my first trimester and struggling with a painful mass that no one could diagnose. Over the next several months, as my son grew healthy and strong inside me, so did the cancerous tumor that was threatening my life.

You see, whether coincidence or fate, the fact that the cancer happened when and how it did was absolutely key to my effective and aggressive treatment and recovery. It may sound strange, but I am thankful that I got cancer when I was pregnant. If I hadn't had Truman to worry about, I'm convinced I would not have found the tumor as soon as I did and I DEFINITELY would not have sought treatment as early or assertively as I did. I am convinced that those circumstances were vital to my survival.

So, this leads me to what I originally discussed in this post which is...our living situation.

After months of scans, tests, research and switching doctors, I finally had a biopsy scheduled. At 30 weeks pregnant I was admitted to Loma Linda hospital for an excisional biopsy of the grapefruit sized mass that had taken over much of my mons and groin. This was late August 2005. Truman was due in late October.

Meanwhile, back at the ranch...Zack (my brother) and his wife Hillary were planning to purchase a home in Hemet. He was working as a finish carpenter at the time and traveled all over Southern California to build new houses. Hemet was as good a place as any to commute from and the houses were pretty reasonable in price which is why they wanted to invest there. Several members of my Mom's side of the family live there and at the time it was booming from a real estate perspective. This town is about 45 minutes from where my parents and much of my Dad's side of the family lived. Apple Valley is about 90 minutes away (without traffic!) Because I was now expecting our first child, and I was unable to work due to the pain caused by the massive tumor in my groin, and because I was uncertain of what my medical status/treatment protocol would be once Truman was born, Dave and I made the decision to move in with Zack & Hillary after I recovered from my first surgery. We were sure we would need the support of family close by. It was a difficult choice to decide to share a household with another family, but it was totally necessary given the circumstances. In fact, that one decision was the keystone to everything that comprised my ultimately successful battle against cancer.

But it was hard.

We shared that house with Zack & Hillary and their twin sons for over two years. And BOY howdy, were they incredibly supportive. In fact, I know we would not have gotten through that period without their help. My parents also came often to help, as did my myriad of Aunts, Uncles, cousins and friends galore. The really big deal was when Gloria (my younger sister) literally dropped her entire life to become my and Truman's full-time caregiver. That is a sacrifice that deserves a whole separate entry to properly address. So yes, we had a lot of help.

But it was still hard.

So what happened after those two years? Well two main things.
1. Dave was not offered a contract to return to the Hemet district after teaching there for two years.
2.  The economy took a nose-dive, with construction leading the way, which meant Zack was now out of work.

End result...we all had to move out of the very large and expensive house. Zack & Hillary moved back to a rental house in Fallbrook and Dave & I moved in with my parents. Just for a few weeks or months at the most, I thought. Just until Dave could find a new teaching job. Or any job for that matter.

Well, after months and months of diligent work searching for a new teaching job, Dave realized he just was not destined for the classroom as his long-term career. So then the real battle began. Dave's vocational crisis just happened to coincide with the beginning of the "Great Recession" and so for literally YEARS he searched, interviewed, networked, odd-jobbed, monster.com-ed, resume wizard-ed, pestered and PRAYED his way into a new career. He applied, and applied, and applied. And he interviewed, and interviewed, and interviewed.  He even drove 6 hours to go to an interview somewhere in the central valley once...just to find a job. He WORKED at finding work like no one I have ever seen.

Oh, and PS...did I mention that a little while after we moved in with my folks, Truman was diagnosed with Autism? No...oh, so there's that, too.

Dave finally found his calling in mid-2009 when he tested for the California Department of Motor Vehicles. He knew he wanted to work as a License Examiner, but there were never any openings at the local offices. So when he finally got the opportunity in February of 2010 and was hired by the DMV in Sonora he jumped at the chance to work there. In case you (like me) are deficient in geography you should know that Sonora is in Gold Country - about a 9 or 10 hour drive north of Fallbrook. So yes, my husband took a permanent intermittent job (basically a temp position) hundreds of miles away because he KNEW it was the right career path for him. He drove up every Sunday after church, worked all week long and then drove back home after work - usually (thanks to furloughs) on Thursday night. This meant he often didn't get home until 1:00 or 2:00 in the morning. He literally put thousands and thousands of miles on our little 1993 Corolla which I am thankful held together just long enough for him to get his job down south.

He did that commute for over 9 months, and then he was finally blessed with a FULL-TIME PERMANENT position. Praise God!!! The only down-side...it wasn't in San Diego. It was in Paso Robles, about a 4 hour drive north of Fallbrook. He was getting closer, but we were still supporting two households and so could not afford our own place at that time. That was November of last year, right after I had my bariatric surgery. Which meant I was recovering from major surgery without the help of my husband 5 days out of the week. Thank GOD for the help of my family!!!

So that is how what was supposed to be a few weeks or months with my parents turned in to over three and a half years. Yep...years.

Which I'm sure must've felt even longer for my wonderfully hospitable parents (especially on Saturday morning when Truman was making a racket and we ALL desperately wanted to sleep in!)

So, now you know why having a housewarming for our little rental house was such a VERY BIG DEAL to us.  Please enjoy some pics from the event and know how grateful we are to all who made the time and effort to be there.

We hope you all feel welcome here for as long as we call it home.

Grace & Peace...

-Hannah, Dave & Truman LaFrenz

Birthday reflections...

Yah, so tomorrow I turn 35.

Not a huge milestone, but it feels strangely momentous for some reason.

Perhaps it's because I have survived cancer...and not just any cancer. Nope.  Nothing ordinary seems in store for my life. It was an extremely rare and aggressive cancer that I was told would likely end my life before my son entered pre-school. Well...he's starting Kindergarten in a few months so I guess that theory pretty much sucked.

Or maybe it's because I spent the majority of my life being morbidly obese and have finally conquered that beast. I've lost around 90 pounds since my bariatric surgery last November, but I'm down at least 125 pounds from my all-time high. Significantly, it will be exactly 8 months tomorrow since my surgery. I actually felt it was some sort of divine intervention that my surgery was scheduled for November 6th. It was two days after Truman turned five and also the same number as my birthday. I can't help but pay attention to numbers showing up in weird ways like that. But I digress.

My point is that since having my surgery I feel VERY different. It is as though I am emerging from some sort of heavy cocoon  and my wings are just starting to dry out. I'm beginning to flutter just a bit.  I hate the whole butterfly metaphor, especially because it is over-used in cheesy pop songs and web vids...but sometimes it is appropriate. Did I mention that I ran (okay, mostly walked, but still...) my very first 10K yesterday? Yah, totally awesome, right? Well...that's kinda what I mean by just beginning to flutter. I can feel all these changes in my ability and energy level and motivation. I mean - even after the race, and all the pain, and the fatigue, and the (YIKES!) blood - all I could think about was how I could better prepare myself for my next event. What is that? The only feeling I can compare it to is fantasizing about my next show during strike night...really the only way to survive the devastation of watching one of my sets being torn apart and thrown in a dumpster. (I'm pretty sure only theatre rats will get that last reference.)

No...I'm not sure that's really it. What I really think it is (and I hope you don't judge me for this) all boils down to a little check mark in a box.

You know the one.  Don't even play.



Yah, that's why I'm kinda freaking out. Or emotional. Or feeling slightly weird. It's because I know that I am moving forever out of the demographic box that all the advertisers and marketing and entertainment and employer-type people care about. FOREVER!!!

Yep...that must be it.

Or I could just be living in some really highly evolved form of denial.

I'll ask my therapist which one it is and get back to you.

But in the mean-time...Happy Birthday to ME!!! :-))

grace & peace,
-Hannah

Welcome and Hello!!!

Let's start by explaining the title...

Advocacy is something I stumbled into through a series of bizarre and challenging circumstances, beginning with a cancer diagnosis that took place when I was pregnant with my son. I had, at the time, no idea exactly how difficult it can be to maneuver in our medical and legal systems, but that lesson was learned VERY quickly. I spent the majority of my first (and as it turns out, only) pregnancy just fighting to get appropriate treatment and an accurate diagnosis. I was robbed of a large portion of the joyful experience of gestation by the physical and emotional pain of a medical crisis. And truthfully, though I was nominally performing self-advocacy at that point, I really began advocating for my child at that very first appointment 11 weeks in. 

No matter who or what you are advocating for, I think it is helpful to think of the subject as your own child or yourself AS a child. This really brings to perspective the fragile and vulnerable nature of someone who is in a medical, social, emotional, spiritual, financial or educational crisis. The details will be very different, but powerful and effective advocacy in any field utilizes many of the same techniques and attitudes. I have a great deal of experience working with (and sometimes against) various bureaucratic institutions in order to survive and thrive in our modern age. 

Truman (my son) is 5 years old and heading off to Kindergarten in the fall and I continue to advocate for him daily. He has Autism so we have had our work cut out for us over the years just getting him appropriate services and interventions.

The stage IV liposarcoma that was supposed to kill me has been gone since 2006, but I'm still here :-)) After almost 5 years of remission,  I am only a few months away from my very own "C" word (CURED!!!)

...and yet, because of the long-term ramifications of my own medical treatments I still have issues for which I need to advocate.

 My hope with this blog is to share what I have learned (and am STILL learning) in my experiences advocating for myself and my family so that someone,

somewhere will reap the benefit of my hard-fought battle-scars. 

Here are just a few highlights of challenges we have faced as a family:

* Cancer

* High-risk Pregnancy

* Infant Feeding Difficulties (Lactation Challenges)

* Vocational & Employment Challenges

* Family Separation

* Financial Issues

* Housing Issues

* Obesity & Bariatric Surgery

* Chronic Lymphedema

* Chronic Pain Management

* Addiction & Chemical Dependancy

* Developmental Delay 

* Psycho-educational Assessments

* Autism

Quite a list, I know. And would you believe all this has happened since 2005? What a way to start a marriage and family! But the important thing to note at this point is that we are STILL HERE!!! Dave and I are still together and happy, we are still faithful and more in love with God (and each other) than ever, and we are truly moving into a chapter of prosperity and blessing right now. God is good, His provision is always sufficient, His timing is mysterious, and His ways are not always our ways...but by leaning on Him and fellow believers we have more than survived - we are THRIVING!!!

So, that's the "Advocate" part of the title anyway...I'll get to the other two words in another post.
Thanks for taking the time to read this and I look forward to growing together with you all...

Peace & Love,

-Hannah