Monday, June 16, 2014

Pancreas Boy and Talks of the "Artificial Pancreas"

For the past few days I've seen several articles about the great new "artificial pancreas" system. Some call it bionic.  Being the proud mom of a child with a delinquent pancreas, my interest in technology that makes his life easier is pretty high.

First of all I must remind that there are different types of Diabetes. Only about 5% of all diabetes cases are Type 1- also known as Juvenile Diabetes- the kind that you are born with or develops after autoimmune attack or traumatic pancreas injury. In Type 1 diabetes the mad pancreas just stops making insulin. Without insulin, sugar can't get into cells and hangs out in the blood stream which is just not a good thing. Treating Type 1 Diabetes requires insulin shots and multiple blood sugar tests daily. Most cases of diabetes are Type 2 diabetes, also known as insulin resistance. The body makes insulin- but it doesn't work effectively. This is a result usually of poor diet and lack of exercise. Phil and I refer to Costco as the Type 2 Club- we stand by and watch as multiple hundred pound humans push past children in the queue for snacks. Some nearly run over the kids on the mobility assisted scooters, legs swollen and purple with neuropathy. I am definitely not a picture of health, but it does sting to be surrounded by people who take for granted the ability to change their circumstance through diet and exercise alone. Now, not all cases are the same and not everyone with T2 suffers from it as a result of overeating.  But it is a bit of an epidemic, especially here in the States.

This past spring we took a trip to Disneyland as the girls were performing with PACK. In an effort to be fair we tried to do something fun and meaningful for the other kids. You know in the off chance that getting to go to Disney for spring break was not awesome enough. Phil decided touring the Medtronic facility in Burbank(as opposed to going on the Price is Right- whaaaat?) seemed like a good option. Medtronic is one of the major manufacturers of insulin pumps- small pager size devices that deliver insulin instead of having to do shots. I sometimes vastly underestimate my husband's goofy genius. It was a hugely successful trip because we all got to see how Phillip's latest piece of diabetic machinery was manufactured but there was also a mini "museum" featuring the history of diabetes treatment. From ancient diagnosis- if you were going to the bathroom too much,  you would be told to leave a bowl of urine out- if the ants overtook it- you had diabetes which means "to pass through".  Later the term mellitus was added- meaning honey, or sweet because the reason the ants were drawn to the urine was because of it's sugar content. We saw models of the first insulin pumps which were seriously the size of a ghostbusters back pack. Although I truly appreciate how far this technology has come- there are still some major hurdles to overcome.

While we were there we saw new innovations- using bluetooth and wireless connections throughout the house- so a mom could be alerted if her toddler napping was experiencing a dangerous drop in blood sugar to continuous glucose monitors and pumps that "talked" to each other- essentially closing the loop in what technicians call an "artificial" pancreas. In medtronic's model- there still needs to be human interaction to ok the administration of insulin. If a person is administered too much insulin- resulting low blow sugar could be deadly. The problem with insulin and blood sugar is that it is a continuous loop involving multiple organs and outside factors. For one stress- stress plays a huge role in the use of sugar in the body. Exercise- where as real time exercise alerts the body to use or store sugar- a continuous glucose monitor can only send data regarding blood sugar trends. All these things constantly remind me how amazing the body is as a series of systems that work together. It makes sense that no one small device could handle the demands of the endocrine system feedback loops. Yet when I look at the technology amassed for convenience- I wonder why the hell not. 

Right now, Phillip wears two sites- both are about the size of a half dollar and raised about a quarter of an inch. The cannulas(little plastic tubes) are inserted with a special device(inserter) and have a tape holding them in place. Both are wirelessly connected to a small device that records data. The two devices can talk to each other. Phillip tells it when to give insulin. He also can tell it how many carbs he is eating and it will calculate how much insulin he needs for him- based on his current blood sugar and number of carbs being eaten to keep his blood sugar in range. The sites last for about 3 days- then he has to plug another one in. The insulin is stored in the pump and also has to be changed every few days- as heat and whatnot affect it's potency this is attached to the site through a clear tube. He takes his blood sugar with a glucometer( finger pricks) 4-however many times a day he needs to. Some days are a lot more than others and that was one of our struggles- getting him to take his blood sugar. It doesn't hurt too much, although if you look at his fingertips you will see little dots from the dozens of pricks every couple of days. His new pump sends him alarms to calibrate- he needs manual blood sugar checks to compare to the continuous blood glucose monitor values. Not any system is infallible and the CGM monitors changes in blood sugar values more so than actual Blood glucose- this is good because it alerts him if it senses he is getting too high or too low- in order to shut the thing up- he takes his blood sugar and react appropriately. 

The new promised "artificial pancreas" is something we heard about right after Phillip was diagnosed. At my cousin's wedding, a friend of hers was doing research on the feasibility of implantable artificial pancreases. Pancreai? Although the idea of out of sight out of mind insulin pumping is appealing- functionally it requires surgical procedures and steps that kinda worry me for a mutant child. As much as I would like him to spend less time worrying about blood sugar and monitoring- repeated surgeries concern me. That is already something that is on the table due to mutant status and propensity to grow tumors. On the other hand- tighter sugar control means less food for tumors. As much as this lot in life sucks for him- he is managing remarkably well. He learned that diet and exercise are tools to managing how much insulin he has to take and how he feels. Although he can not control his pancreas function, he can control how much he puts into the system and other factors. Even though I would have preferred for him to learn this lesson another way, I appreciate the growth I see and the thriving despite circumstances. 
an implanted insulin pump
Realistically, I think closing the loop outside the body is a good predecessor to implanting devices. The size of the devices still needs to come down. I look at cell phones and what can be achieved - I know the future holds promise for medical devices. I do believe artificial pancreas in a misnomer. As the mother of a child who is lacking a pancreas- I garner a true appreciation for what that organ does. It also gives the general public a false sense of where the technology is at.  The collection of multiple devices talking to each other is a huge step forward- but pancreas they are not. Insulin system, yes. They have even added the glucagon element which is huge- glucagon is a chemical that signals the liver to release sugar stores when blood sugar falls dangerously low. One of the huge worries in a diabetic lifestyle. Phillip carries a shot around with him in case of an emergency. The new "artificial pancreas" system adds this element to another pump, poised and ready to wirelessly communicate with the other pump and continuous glucose monitoring system. You still end up with a whole lot of inpector gadgetry and wiring before it is good to go. In a stroke of genius, the system includes use of an iPhone. By promoting an apple product, hopefully ensuring a partnership that could symbiotically improve the lives and business of many. Because what it ultimately comes down to in the world of health care is the business side of it. 

I am hopeful that in Phillip's lifetime there will be really good options for him to manage his diabetes. I am grateful to the researchers and teams who are working really hard at improving these lives. When I told Phillip about it and asked him what he thought- in 14 year old fashion he shrugged. He doesn't really want to wear yet another piece of something.  I think in the grand experiences we've had with cancer, sometimes diabetes takes a lesser stance due to it's relied treat-ability. Just like each pancreas is unique- each diabetic has a different take on what is a convenience and what is a hassle. Any way you look at it- options are always good. I can't deny as I hear other parents who have kids with other endocrine disorders using the diabetes model to make their kids' lives better- I have hope. I have hope that these systems will be the forerunners for treating many conditions. So here's to the artificial pancreas and the systems it will lead to. For diabetics and other biological conditions. 

Thursday, June 12, 2014


Being in the hospital is one of the most torturous experiences.  By all recent comparisons, this stay was a 4star excursion. I had my own room and Phil stayed the nights with me. Not the romantic 2 night get away that I have been dreaming of, but we survived it and that's all I ask for these days.

I absolutely do not know how non medically savvy people negotiate hospitals. I feel like at every turn I am telling someone how to do their job in respect to me. It's exhausting- this continual advocacy. Some say it's because we are in the military health care system, but I think that is a side effect of a bigger problem. Jaime sat, visiting with me in my luxurious suite with a perpetual look of horror as I explained this was the nicest room I'd ever been in here at Tripler. She asked when the last time I was in a private hospital was. Never. Not me anyhow. I've visited friends in private hospitals. I can overlook the bells and whistles for quality care. More often than not, quality care these days feels like it merely doesn't kill you.

The preop visits to the surgical center usually horrify me. They are aggravating in that not only are you a bundle of nerves- but you are sitting in a room with other nervous folk waiting, waiting waiting to tic items of a checklist that cumulatively take a grand total of a half an hour, yet the visit drones on for close to 3 hours. You don't meet with any of the people you will be seeing the next day and they always deliver disappointing news like- you cannot eat after such and such time and oh- be sure to stop by the pharmacy to waste another hour of your time to pick up some nasty concoction to drink and prepare the bowels fro surgery. Oh crap I forgot about the bowel prep. More so I filed it away under something one doesn't want to think about.  To add insult to injury you have to start cleaning the pipes at 2pm the day before.  So the last dinner turns into last lunch and each bite chewed is chewed with the dawning realization that it shall be but a memory in a mere hour or so.

Whether Jaime was the good luck charm or slathered over my chart was some cryptic have mercy on this poor woman who contrary to what is IN this chart does NOT enjoy pain- the day progressed fairly painlessly. I even managed to squeeze in an annual well woman exam while Jaime waited for my pharmacy number to be called. Because amidst all of the appointments in the past month leading up to this surgery- it failed everyone's notice that I was overdue for a pap. Either way- it was taken care of.

We arrived home, I drank the lemony flavored make you poo goo and dreaded the next events.  Since I react to all kinds of things- I don't do the weird pre surgical wipes which cover you in a bacteria fighting film and supposedly cut down on post op infections.  I have theories on this and infection control in general- but I will keep them to myself. I generally am relieved to be first case as the assembly line processing of the ORs always makes me wonder. Either way- I shower night and morning before surgery. This whole not having hair thing means less toiletries for the hospital and not having to worry about crazy post op bed head. The sun is still soundly asleep when we begin our trek to the hospital. And less shaving for the OR team- woo hoo.

Despite my several pre op appointments and pre surgical arranging- no one is qualified or has the appropriate supplies to access my port in the OR. After not 1, not 2, but 3 IV tries- I have an IV barely hanging on between my ring and pinky finger knuckles. Obviously it doesn't matter that all blood draws will have to be below that( I guess out of the webbing between fingers) and I have an entire arm that cannot be used due to lymphedema risk- they have fooked away my good arm's worth of veins. It is too early to call the VAD team or wander down to oncology and just have them access my port. I shake my head. Fairly unacceptable. Had I not gone over this with pre surgical people- I would have just gone into oncology and had the damn thing accessed the day before. Instead I now have a greenish brown zombie arm as the multiple vein blows heal.

The only reason I dealt with it is because an IV is needed for versed. Versed is my favorite and the only reason you can get me anywhere near an OR. Within a minute of that injection you are waking up in recovery and everything is a little achy and foggy.  I woke up with 2 IV's. Both of which came out within hours. One as I tried to sit up, I look down and blood is dripping out of my hand and there's enough meds going on that you just look at it like- hmmm that's probably not ideal. That is another pretty green brown zombie bruise now. The other had clotted.  I spent many hours that night as a nurse whacked my hand and arm trying to find a viable vein- consistently ignoring the one I pointed her to and finally after Phil kicked her out of the room and another nurse came in- did they get blood from the vein that I had pointed out. Advocacy is exhausting.  I had decided then and there I was out of there as soon as humanly possible. Saturday afternoon was the earliest they would consider letting me out- so by Saturday morning I was asking to leave.

Any surgery sucks. Abdominal sugary has it's own set of not niceties. Standing up sucks. Walking sucks- as things get moving again- it most definitely sucks. Waking up and feeling like you have to sneeze sucks. As you try to prop yourself up to grab the pillow to hold against your tummy so your intestines don't get blasted across the room. Ah good times.  The first day home alone with the kids- I decided watermelon sounded good. So bella put the watermelon on the counter for me. The leverage needed to slice said watermelon was more than I had- so I asked Kiera to please take care of it. I went upstairs to nap- because on narcotics- leaving kids downstairs with a big knife and a watermelon seems pretty acceptable.  After a short nap- I return to Kiera- several bowls of weirdly sliced and crushed watermelon- a mop, a sticky floor and her brother sitting there eating watermelon while she giggled. Later we find out that she ignored the watermelon and it rolled off the counter and splattered everywhere. SO she put the smooshed watermelon in the colander and rinsed it. That melon is what her brother gnoshed on. Hence the giggling. She was on her 3rd round of mopping but from what I can tell- In true Gallagher fashion- she was just pushing watermelon juice around.

Today has been a week post surgery and I am starting to feel human again. We've had a couple hurdles. I'm on blood thinners(fun nightly Sub Q shots) and antibiotics.  I can lay fairly comfortably, sit fairly comfortably and stand up pretty straightish. I am very tired. After 4 c sections, I knew what to expect and my expectations were a little high. This led to many a melt down while Phil assured me I was doing fine. A 15 minute phone call should not require an hour nap- I blubbered. I am a human paperweight I cried as the fan blew a few of the girls get well cards around the room- and I'm failing at that. I'm very antisocial post surgically. It's probably best. I know that next week will be better and the week after that better and then back to the chemo routine. And that absolutely sucks. Getting better to get knocked back down. And then the sun comes up over the palms and the clouds drift by and I feel good enough to sit outside for a half an hour and enjoy it. And the kids give me hugs, gentle, careful hugs and kiss my stubbly head and that's why we get up and do it all over again. These wounds will heal and hopefully lead to something better.

Tuesday, June 3, 2014

Friends with Benefits

Over 20 years ago, I was the new girl in school. Middle School. In the middle of my 7th grade year- as if that year isn't a bundle of fun anyhow- we picked up and moved from Ohio to Colorado. It felt like everyone knew each other and again, I was the odd girl out. I don't know if it helped or didn't help that just a couple years prior to that we had moved across town in Toledo- I had already gone through being the new kid. As I learned- moving across the country and moving across town really is all the same difference when you are a kid and have to switch schools.

A few months after I got settled in Colorado, I was sitting in class chatting with my new friends and in walks a new girl. I so remember that feeling- the eyes on you, the whispers and then the one person who reaches out to say hi. For me that person was Addie. The sweetest, friendliest bundle of fun you could ever meet.  So I smiled and introduced myself.  And that is how I met Jaime. With an AI not an IE.

Jaime moved from Pittsburgh and well, when you are in Colorado- Pittsburgh and Toledo are like next door neighbors. She was easy to talk to and school chats led to weekends hanging out, to movies and talking about boys. Jaime's mom terrified me- she was a teacher and had a no nonsense approach to all humans under the age of 18. After a few months, she was my second mom. Her relationship with her dad was like mine and my dad's and he came from an Irish Catholic family- just like me. Her big sister Kellie became my big sister.  In high school, Jaim decided to try out this program called IB- International Baccalaureate- it was good for colleges and had an emphasis on second languages. She already had a leg up as they regularly spoke Spanish at home. Well that meant I was totally going to have to try this IB program. Months later Jaim abandoned me in the IB program for the AP program. Something I may not have been able to forgive, except while in the IB program Jaime dated this kid Phil Mallory. I did not like this Phil Mallory oh no I did not. I thought he was a bit of a jerk and a big shot.  Well Jaime convinced me he wasn't and we spent many after school hour watching baseball or football games featuring Phil Mallory.  It didn't work out between them. But fortunately for me it was an amicable split, because that Phil Mallory became my life line and entertainment for the rest of high school.

Jaime was there through Bob's cancer and her home was one of my refuges. Baking cookies, her mom yelling at us to clean up the mess. Years later, her mom's secret scone recipe was gifted to me- and our family tradition of Scone Sunday was born.  Their home often representing the normal family  life I missed. When dad died the week before graduation, Jaime's family made sure I was included in the celebration since all of our party planning resources had been dedicated to planning funerals.

Jaime and Kellie mentored me in spanish when I decided to spend a summer in Honduras. Which is to say I listened to them speak. Kellie even made me a mix tape to listen to on my journey. Years later, a resident of Las Vegas- Kellie was the only reason as a newly married wife- I was comfortable with all the trips to Vegas. I received more than one tactful conversation from a concerned military wife who mentioned Phil may be spending a lot of time with someone in Vegas. Much relief ensued after much laughter when I explained she was family. We were at CU together and Jaime held my hair back on more than one occasion and was my wingman when Phil showed up with spare AF cadets for weekend visits.

Jaime and Kellie were there to celebrate when I married that Phil Mallory- despite paltry notice and busy schedules. Jaime helped decorate for my first baby shower. Her parents became abuelos for my kids- always sending treats and cards. Kellie housed us an our bird flu episode on our great journey to the Aloha state. Every trip home to Colorado meant a visit with Jaime. It truly was a family reunion when Dr. Jaime married Dr. Right, all of us floating around a lazy river in the hot Arizona sun.   Jaime and Alvaro got more than one panicked call from me- Phillip swallowed a screw- what do I do? Do you think I should Vbac or just C-section, again? Lily has Cancer Jaim- what do we do?   It was Jaim who told me to get off the damn computer, stop researching and go be a mom.  When I traveled to Colorado after my mastectomy- she plied my kids with marshmallows, chocolate, graham crackers and fire- while Alvaro and I discussed the finer aspects of reconstructing.

Jaime has been telling me for years to get my ovaries out. I trust her. I know it needs to be done. There is nothing better than having a good friend who is a doctor looking out for your best interests when you have LFS. You get the benefits of knowledge and friendship. She's been telling me for years when I schedule the surgery- she'll be there.  Months ago I kept getting patient email reminders.  She knows when tough love is needed.  So when I finally scheduled the surgery, I shouldn't have been surprised that the next email I got from her was an itinerary.  I have to say having her here might be the only thing that's getting me through this. Part of me isn't sure that I've been a good enough friend to deserve her or her family- I know they have been through many tough times and I haven't been any support.  But I am grateful. I am so glad that 20 some years ago I took a chance a smile at the new girl because she has made such a huge difference in my life.

Summer Plans

Most summers past consisted of me trying to strategically plan activities for the 4 kids with precise dispersement so that there was balance between downtime, fun and productivity. With kids spanning so many years and interests- and a finite budget- this is tricky. Many years have included various camps and fun and good summer memories.

This year is no different except that for the better part of the summer fun time, I will be recovering from surgery.  Here's the long and the short of it- with not too many crazy details but enough to keep the masses of 3 who read this blog happy- although I'm pretty sure those 3 know the ins and outs- but here it is.

I started chemo 6 months ago. Every three weeks I have Herceptin, pertuzumab and abraxane. With the exception of the week before we went to Disney- I skipped the abraxane so I wouldn't feel horrible.  While on chemo, many women go into menopause. I did not. It would have been the preferred case- since my tumors love estrogen- so we began to talk about what we could do to stop this feeding frenzy fueled by my super ovaries. Years ago we used to joke that Phil could just smile at me and I'd end up pregnant- well all those hormones are no longer needed and working against me. I tried taking an injection that stops the ovaries and their production of estrogen. It worked briefly. We tried another shot. It did not work. I had a biopsy to make sure there was no cancerous issue going on that was causing the bleeding- it was clean.

I got a call from my onc nurse- we miss you, is everything OK?

At chemo # 10, 3 weeks ago- I stopped in and chatted with my oncologist and we decided that I should be strong going into surgery and having chemo the week before probably wasn't ideal. Since my scans in March were awesome sauce- I get a week off. That means 2 whole weeks of feeling ok before surgery on June 5th. Now if I subtract the weeks worth of preop appointments and stress associated with going to Tripler almost every day- well I still get a week of feeling good. Beggers can't be choosers and I truly try to embrace my days.

That week was last week. I had date day with my husband. I made a trip to Target. I cooked 3 times. I went to not 1 but TWO work functions with Phil. I still have only gotten a fraction of the things I wanted to get done accomplished, but I've met with friends, started organizing my closet- cleaned off my desk(anyone whose dropped dinner off knows that was NO small task). What desk? Oh that pile of craziness behind the mountains of laundry actually has a desk under it.  At 10 pm last night, after spending the better part of the day trying to finish the closet mess I started,  Lily comes down with tears and a fistful of bills. I can't find my hearing aids, I think we are gonna need this. 

The hearing aids that are loaners because the last pair was lost? The hearing aids we specifically talked about treating like gold? The hearing aids that took 3 months to get an appointment to get on loaner?  We tear her room apart- I systematically go through her desk which is an episode of hoarders waiting to happen. She knows how bad this is. This also explains her mood for the past few days- I thought it was because I was going in to surgery and she was feeding off my stress. It turns out this is just normal life- kids learning their way and us there to guide them. We just did this a couple months ago- the last time she lost her hearing aids. I hear Phil on the stairs-psst. He holds up the case. He found them. phew. I can't help but feeling this may be just the distracting crisis I needed to put everything into perspective. Lily and I continue on into the wee hours of the night- getting her side of the room squared away. Nothing like a little motivation to accomplish a task. When the adrenaline wanes- I am too exhausted to carry on, we tell her we love her no matter what. We tell her it was irresponsible but not the end of the world.  She's had days that she's worried about this and it concurrently makes me sad and angry. Sad she has to worry and angry that we have so much going on she didn't come to us and tell us. We try to impress upon her an ounce of prevention and care can alleviate a lot of stress and worry. Like tonight. If she had told us when this happened- we could have taken care of it then, instead of her not sleeping and hoping they would turn up. She nods. I hate cancer she whispers as she hugs me. I can tell she won't sleep any better. For the past 4 days she's said this many times. I thought it was about me and I worried. I was worrying for the wrong reasons. I nod to Phil, he shows her the hearing aids. She can sleep now.

But it is part of her reality. Sometimes reality bites. Some times more than others. Cancer is our reality. It has touched us over and over and hangs like a cloud over our little Li Fraumeni Syndrome family.  It's hard not to get bitter and envious of families who never deal with cancer. It's hard not to compare over which cancer is worse or whose road has been tougher until you realize it is just counterproductive. At the end of the day, we are all just humans trying to navigate these shark infested waters of crisis and emotion. Lily was upset because cancer caused her hearing loss. The hearing loss means she has to worry about these expensive little pieces of aid. I tell her stories of how in a small way I understand- with having to wear glasses since I was 8- having them knocked off in gym class- not being able to see when we went swimming. And now- having to throw a prosthetic boob around. And I am sad. I am sad I didn't know about the cancer kids camp that was this week. There are so few opportunities here and I got wrapped up in my own journey- I missed an opportunity for her. I think she would have benefitted. Because despite us plugging along like normal because I want to feel normal- sometimes our experiences need to be validated. I don't mean by wearing a ribbon and a shirt that says I survived- although those are all tools- I think being around others who have had similar journeys is the most important way to accomplish this.  Phillip benefitted so much from diabetes camp the year he was diagnosed. Somewhere in the human connection, you can see we all have journeys and they are all tough in their own way. Sometimes by reaching through the pain and reaching out to others for help not only do we help ourselves but we help others feel validated and in return are helping them. And I am so sad that our reality is so busy that I missed this.

The reality is no one knows for sure if this surgery will help. It's considered risk reduction and has it's own set of side effects and possible complications. I know right now my system is a bit of a mess and hopefully we can knock out the hormone part that is feeding cancer and that might buy some time to lay off chemo for longer bits and have a better quality of life to hopefully be making summer plans for many summers to come.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)