Wednesday, February 26, 2014

Rudy's Hot Dogs- A Family Tradition

About a week ago, Phil and I were on rare walk together during daylight.  As we filled each other in on daily events he mentioned casually that the Toledo Air National Guard was participating in their big exercise coming up.

Oh Really? Says Jen. And will the Toledo Guard be bringing Jen some of the World Famous Rudy's Hot Dog Sauce?

Um I don't know say Phil. aka Buddha, Oh did I tell you they were filming for a newscast at work too?

See the funny thing here is that Phil holds a very special place in his heart for the media.  And it's not a good place. He usually politely declines to be present for most media opportunities. He likes to stay off the grid.  He said he asked specifically not to be in any close ups for the newscast. Yet somehow the grid finds him. I find it hysterical that for the first 3 years of our relationship I had to endure hundreds of mock interviews regarding anything from sports events, to test performance to who had the best ever Dorito Crunch. The kid was a natural. So I wasn't surprised a few years later after a parachute jump into the Tostitos Fiesta Bowl- to see a photo of young Phil being interviewed for the local TV station.  As it turns out- one of the guys told them he was a local boy as a joke- so he finally got his big interview. Years later after his first deployment- he was wrangled again by a local crew for an interview.  And then again on the day they returned.  I think at some point he filled his 15 minutes of fame and was happy to share the fun with others who seemed to relish it more. Since then he generally finds a way to be anywhere but in front of a news cast or camera.  That is something we both share- neither one of us particularly likes to be in the spotlight- it just feels awkward.

My dad was the complete opposite. He could walk into the room and command it. Lily has that gift. My dad had a gift for making horrible situations laughable and for really testing the boundaries. He would do really quirky things just to make us smile. Or just because he could. One of these quirks was the randomness of gifts he brought home from frequent business trips back and forth from the Toledo office.   We moved to Colorado in the late 80's from Ohio. Toledo had been our families' home for generations.  It was a tough adjustment until we realized how much bigger the world was than Toledo. Yet Toledo would forever hold a certain place in our hearts with a tattered and well loved label- home.

Toledo was supposed to be a big city and it tried for years to find it's niche- yet somehow never did. It was a port town with major rail connections when air travel became big. Yet somehow- like the Connolly's- it just keeps plugging along, trying to find a way.  As a child- the only big thing that I knew came out of Toledo was Klinger from M*A*S*H. Of Course later, I would see pieces of Toledo everywhere-  A JEEP  always reminded me of the exit to Grandma Connolly's house- off of Willy's Parkway.  When we would go to Grandma's- often times we would stop and Pick up Rudy's Hot Dogs.  We would stand in line at this Toledo institution and order as many dogs as we thought we could stomach. We would down them with red Fanta while perched under the least scary deer or elk head mounted above each table.  Rudy's are not your average Coney Dog and probably could not be marketed effectively to a broad market, but they were a tradition.

After we moved to Colorado- it was one of the gastronomic delicacies we missed. Mom tried pretty convincingly to replicate the sauce and even steamed the buns to the point of sogginess- because that's how it's done. But it just isn't the same. So one trip to Toledo dad called to make sure we'd be home for dinner. A lot of times we'd pick him up from the airport and go to dinner- but everyone's schedules were busier. When he walked in the house we could smell it- a waft of home- the meaty spicy call of Rudy's Hot Dogs.  Those were the tastiest, most well travelled hot dogs we'd had in years.  As the story went- he just wanted to bring us a taste of home. Mom later hypothesized that he may have just been planning ahead for a long flight and that he never much cared for the airline food. Regardless of inspiration or reason- he waited for Rudy's to open- had them pack up 2 dozen hot dogs, quadruple bag and insulate them, raced to the airport- hand carried them on a puddle jumper to Detroit- made the connection to Denver- all the while fending off fellow hungry passengers who identified the familiar scent.

A couple of years ago, I took the kids home.  We drove by both Grandma's houses on our way to a friend's house for lunch.  I couldn't pass up the Rudy's. Even though we were on our way to lunch. We ran inside to get a snack. I let them know- it was just a snack. The kids marveled at the stuffed venison while I ordered- taking notice they now sold cans of the famous sauce. Toledo still has the small town feel and I did get an approving nod when I ordered a dozen cans to go with a couple of hot dogs and a Fanta.  I mean after all I was no longer from around there- but I could still take some home with me. The kids, now addicted to Rudy's would down 3-4 at a time and requested them for every meal after that.

We had Rudy's A LOT that trip. So when Phil mentioned Rudy's might be on the way soon- Bella and Lily immediately perked up. Presents? Rudy's. You mean the place where we went that one time that you only let us have half a hot dog?

Yes. The same place that we went 4 other times that you had like 3 hot dogs.

Yeah we like those.

This morning, bright and early I get a call from my neighbor.  Your husband was on the news! I don't generally watch the local news because I know it's going to be 82 degrees, there will be traffic, there are waves somewhere around the island and somebody did something that was stupid and got arrested because it's an island- where are they gonna go?  I laugh hysterically because I know Phil will be mortified. I then run over to my neighbor's house to witness the recorded spectacle.  I have to say he looks pretty handsome and like my Buddha. And he probably wouldn't have gotten any screen time had he not been so adamant about not being on screen.

Hawaii News Now - KGMB and KHNL

HNN-Hawaii Air National Guard Aerial War Games
As I watched the story,  my phone vibrates.  I look down to find that Thanks to Toledo Air National Guard- the Rudy's tradition continues! And it feels kinda cool to be responsible for adding another big stamp to the Rudy's Passport!

Friday, February 14, 2014

Love in the Time of Cancer

Today is our 15th Wedding Anniversary. A week ago I was feeling very low. Phil bought us Lion King tickets for our anniversary months ago and I was at a loss for energy- creative or physical to come up with an extraordinary gift for the man who is the most wonderful person I have ever met.  I lamented to one of my favorite mutants through tears and kleenex. Her wise and experienced response-

This is love and cancer Jen. Sometimes him knowing you love him and adore him, is enough. You can't give more than you have. 

But 15 years ago, we stood in my mother's living room and I professed to give him everything, to share everything, to be everything together.  Sickness, health, richer, poorer. So I racked my brain and my heart- which I had promised him completely many years before that and every day since then.

There were years where uncertainty clouded our dreams and our time. This may be one of those years. There were times that challenged our hearts and our resources. Yet through those times we never took for granted each other. Through the rough patches we always have and still choose to create our happiness.

There were times when we were very young and in love that the world seemed opposed to us. That no one understood. Yet somehow on a cold snowy night, we sat in a dark kitchen with a box of ritz and some cheez whiz and through tears mended our hearts and placed another brick in our foundation. Years later when there was not enough money or energy, when times got rough- really rough- out would come the box of Ritz and Cheese Whiz. And we would sit on the floor and lay another brick or two- because although the storm may shatter one part of the house we still had that foundation and we would think back to the other times we had those moments and know that there were so many good times between and there would be again.

Every year we profess no gifts. And every year there are gifts. Whether it's a card or a memory- there would have to be a gift. I thought of the good times and my role as the historian of the family and knew my gift was that. Compiling all of those happy times. I knew what I could give with the energy I had.  SO I sat and I gathered and I collected our memories. I cried tears in longing for the easier times and laughed at how happy we've been. I cherish the memories and the life we've built together. As I fussed with the new computer and forged my way into a new era- I completed the project just as he returned home.

And just as he professed no gifts- he walked in with a bag and what was inside that bag may have been the best gift I could have ever asked for or wanted. The books may say the 15th Anniversary is Crystal - but I know different because there is something more precious than that.

So we sat and we placed another brick on the foundation and found comfort in just being together as we remembered all the times that led us here.  After all sometimes all you need is love in the time of cancer. 
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Tuesday, February 11, 2014

Mallory Housekeeping

Ahhh housekeeping. Long and boring- much effort to keep up with what has become our routine medical housekeeping. From the delightful ladies who take care of your room on vacation to the snarky joke every time there is a knock at the door, bonk chica wow wow- but I didn't order any housekeeping to the term describing taking care of basic procedures of an operating system.

The month of January was a lot of housekeeping for our family. We actually hired a housecleaning service. This brings me joy. It is bittersweet as I really am sad that keeping up with the housework is so taxing- BUT I never really enjoyed it so that is a pretty easy task to hand over. I am so grateful for those who have pledged support to our family and please know that your donations are going towards something that makes my life so much easier- and cleaner!

We had many appointments to keep up with all of our various medical conditions and well as some drama and paperwork surrounding the school situation and Lily. It never ceases to amaze me how much of policy is steeped in fear of litigation rather than the common sense best interests of people.

Jen's Update.  We met with my oncologist in January and again today. As we had figured- my course of chemotherapy is continuous. Although we may reach a point where I choose to take a break, that break would really mean skipping a cycle of the harshest drug, abraxane. It would be a break to recover from side effects and hopefully get some energy back and feel better if only temporary. After watching how horribly sick Lily and others have gotten from nastier chemos, I feel like it is not my place to complain. All I can say is that the fatigue is real and limiting. The GI effects are gross and also limiting but I'm learning to work within that. The pains so far are temporary.  When these effects become too much of a burden on me and my family, we will discuss options. It is a balance. It is an unchartered path. Chemo and Cancer Choose your own adventure.  A balance of side effects and dying. I would be lying if I said I hadn't been horribly down lately. I have been working hard at redefining my goals and perception of our new reality.  Sometime you have to just bite the bullet and say- yeah it sucks but this might be the best it ever gets- this is our new normal and learn to function within it.  There were mornings I burnt the bacon. broke the bowl. grated my thumb in the queso. Phil always said I put a little something special in my dishes- I don't think that's exactly what he had in mind. I miss cooking.  I miss the ability to cook. The ability to keep track of time and multitask and not constantly fumble things that I try to grab. Phil jumps when I grab sharp objects. The kids run to grab me covered cups.  I miss feeling good. But know this is the new good. I miss being able to whip out a blog post and think clearly. SO I take my time and get to it when I can. I hate that things are so hard. But am glad that they still ARE.

Today we talked scans and quantifying tumor burden. It is terrifying. I will do another PET/CT  soon which is an absurd amount of radiation. Yet it is the best way to quantify and gauge if the chemo is working and to what degree my tumors are responding or not. I swear I'll remember to get printouts this time, but know my memory is less reliable than the queso at this point. We will do another ECHO to make sure there isn't any heart damage developing. And I am going to talk with a GYN Oncologist to discuss the removal of the run down baby factory machinery. Fact is I'm not using it. The bits are rusting and the rust is polluting the groundwater. Although ovarian cancer is not huge in LFS, it has been seen and since I'm not using them- it may be best that they go. With 4 c-sections under my belt- the poor uterus has seen a lot of trauma and may rebel with rogue cells at any time. I am comfortable with removing them both and they produce estrogen that can feed the very cancer I am making myself sick trying to fight.  And with that we trade one set of side effects for another. I don't want to have another surgery and right now it is tough to plan. SO we opted today for a shot that will stop my ovaries until we can plan the surgery. Without getting into too much gritty detail- most women go into menopause with chemo. I did not. I have always been fertile and obviously the garden was not going to die without a fight. It makes me nervous(and doubly miserable every cycle) so I would rather not stress that my body is producing too much estrogen and feeding tumors.

Jen In a nutshell- Keep Calm and Chemo On,  check on heart, schedule hysterectomy around chemo and life. 

Update on Phillip- Phillip joined the wrestling team at the beginning of the year- I have a great post on that I might get around to finishing some day. The activity is good for him but raises issues of weight class which I am NOT a fan of. He was not doing the best he could with blood sugar management for his diabetes. A dear friend - also a doctor- assured me that she's seen many a diabetic 14 year old who uses blood sugars as their control item. That's my problem- I would like him to CONTROL it. It's not out of control, it's just not where it needs to be and I need it to be better because I just can't worry about him, but I do and I will always.  But before his endocrine appointments we go over his numbers and talk about how we can do better. I plug the dongle in- and yes that is the official term and adequately describes it's uselessness- and try to download his data. Nothing. I look at his glucometer and can only find some readings from December. There's a hole in the screen and black lines across it. He is tasked with manually recording his glucose readings- his pump should keep track of his insulin intake. BUT the battery cap keeps falling off that. Add to housekeeping items- discussion of new pump.

Phil arranged to take Lily and Phillip to their conglomerate of appointments for a couple reasons. 1) they are a stress for me and he's wonderful and trying to decrease my stress and 2) hospitals are germ factories and a little infection or cold could knock me out. I have to admit the thought of a cold in my glittery tumor filled chest is frightening.  Phillip's A1C(measure of glucose bound to hemoglobin- essentially a 3 month idea of blood glucose averages. ) is creeping up and we need him to get that back under control. There's a new pump system with medtronic- they call it an artificial pancreas- which any diabetic will tell you- it is NOT- BUT it is one step closer to closing the loop for this special population. It uses the same pump to monitor blood glucose and insulin. Unfortunately there are 2 sites- so he will have to wear two different walnut sized patches- one that monitors his blood sugar(and can be set to turn the pump off if his blood sugar drops ) and one that delivers insulin.  Because Phillip is 14 and wants to be normal- he lets his blood sugar run high for wrestling. This means he doesn't give himself enough insulin. This is a problem- because how can he get bigger and stronger if energy is floating around in his blood stream and can't feed his cells? Don't even get me started on the carcinogenic implications of free floating sugar...he's heard it from me and it may be harsh but it is a mutant reality.  If he is old enough to clash his violent little clans or play death con 89 on wii- he can readily understand future implications of mismanaging his sugars.

Blah blah Boy Nutshell- Keep Calm and Manage Blood sugars. Phillip will be trying out a new pump soon. He is doing well for a 14 year old, even though we would like to see better control of his diabetes. His grades are excellent and his piano talent is phenomenal.

Miss Lily Monkey Update- Spunky Monkey is very smart and knew her appointments were coming. We had a check up, a bone age,  a 24 hour urine catch (good times to be had by all- it measures certain hormones in her urine to tell us if she is having normal hormonal development of excessive hormones that might mean possible oncology issue) an MRI and a stimulation test to see if her remaining little adrenal gland is still trying to be the lil adrenal gland that could. She is a little rockstar. And when she wears her hearing aids she is a not tone deaf little rockstar. Yet Bella is completely tone deaf so we really cannot blame the chemo for everything.   Lily is managing her fears of getting poked and doesn't use any numbing cream or patches- as those annoy her more than the stick. Our nurse is awesome- and does great despite her own personal fear of needles. I often wonder what kind of person becomes a diabetes educator/nurse when they are terrified of needles. Well it's someone who is strong and overcomes fears- which is the exact person I like for the job.  Lily also tackled another MRI without sedation and the tech said she did so well he thinks she can do the full body MRI in July on her own. I hate that my kids are having to master these routines- but so proud of them for taking it in stride.

 All in all the news was good. Her bone age is advanced still- due to the excess hormones she had from the tumors- she will always probably track a bit older. Our endo who I trust completely is not concerned. The MRI of her abdomen came back unremarkable, nothing of concern- NED- oh dear dear friend NED. The stimulation test was the same as last time- meaning her adrenal gland has a very little amount of activity and we cannot trust it- yet. We will keep watching it, but for now this means she remains on daily hydrocortisone meds and we will always have to watch her with sickness or injury.  Her other levels are all appropriate and no cause for worry. She is a big girl and physically advanced, but she is healthy and doing well. For this we are extremely grateful.

Monkey Nutshell- Keep Calm and Monkey On. Lily is doing really really well. SO yay! Grades are good, school environment is managed. She loves singing and dancing with PACK.  She recently started piano lessons and may someday give Phillip a run for his money. 

Kiera Tweennuts- Keep Calm and Drama On. Kiera had straight A's last semester and made Principal's list. She loves performing. She is going through the growing pains of her age and we all feel the aftershocks- but she is a remarkable young lady and has an amazing future. 

Bella Boo broke the Nutshell- Keep Calm and Be Boo -a- rific. She is a spunky lil one. She is doing well in school and will do fabulous in school when she takes her time. Can hardly criticize her feelings of urgency- although sometimes we just need to slow down and get er done. She is in soccer and LOVES it. She also started piano and is trying to teach herself 'Let it Go' from Frozen.  Phillip may have gotten all the talent there- but she loves it which makes her a bundle of fun to watch.  She has a wisdom and empathy that really brightens my days and she often will say little things to me that break my heart and mend it all at once.  Yesterday after chemo she hugged me and told me I was really really brave and strong for going through all of it. 

Sometimes when you are cleaning house- you stop and realize how much better everything feels when it's clean. Sometimes you are exhausted from the effort and wonder if it's worth it. Sometimes you find trouble buried under the dirt. Either way- we've learned that a little routine housekeeping goes a long way for prevention.

Wednesday, February 5, 2014

Fortunate Fortunes

Years ago, eating at Panda Express after a scan or a tough clinic visit became a routine for Miss Lily and the rest of the mini mutant monkeys. When Panda opened down the road- there was much celebration of fortune. We dreamed dreams of fluffy orange chicken clouds and floated along rivers of noodles. We have become fortune cookie officianados. There are rules over who gets what cookie and no one ever wants the broken one. I've started taking mercy on the broken ones- they didn't mean to get broken and it doesn't change their fortune. The fortune is actually easier to get to and I'm old enough to know I've cracked open quite a few cookies.  Sometimes the fortunes are simple statement of fact- your opportunities are many or you will soon go on a long journey.

You are guided by silent love and friendship around you.
Fortunes like life are what you make them into. Take any statement and you can turn it into a mantra, a curse or a dream based on what power you give to it. As long as you realize the true fortune is in the moment and inside you. The rest is just dessert.

This was one I got after my first chemo.  Ah the ironic fortune is one of my favorite kinds. Yet fortune, like friendship has a way of being there when you need it. Telling you the truths you may not believe. Or giving you a bit of hope to reach for. Or for the times you just need a laugh.

This was Phil's fortune on his very first field trip as chaperone for Lily's class adventure to Chinatown for Chinese New Year. The contemplative fortune. Phil texts this to me and I spent a half an hour wondering what problem he chose to signify and if he could find understanding. Can we ever truly understand the great problems that mar our path? Later I brought up the fortune wondering if he was ready to talk about cancer and life and the uncertain future. I asked if he found understanding. He said no- the problem was the waitress didn't listen as they were boxing up leftovers so he ended up with a lifetime supply of fried rice and not nearly enough broccoli beef. Sometimes you can't stop to contemplate. Sometimes you just have to keep on keeping on.

The next night I am trying to find balance. Phil was at a funeral for a former boss who passed suddenly. Phillip has wrestling, Bella has soccer and Kiera has science fair awards and all overlap. I leave Phillip to his own devices, pawn Lily and Bella off on my sister in law and take Kiera to her awards. On the way we stop for a quick bite. I ate little, unsure of how my iron constitution might powerfully and physically betray me. I grab a fortune cookie, hoping to find some lighthearted introspection and this is what I read....
I laugh and show Kiera. I wonder if I am going to have to perform the heimlich she laughs so hard. I think you got the wrong one she says. I think so too for a minute. Then I remember how fortunate I am. Length is not always measured in minutes, it can be measured in feet or miles. Perhaps length is relative. Perhaps it's not the size of the fortune but how you use it. Perhaps the fact is we just don't know. Whether this fortune is statement of fact, ironic, or contemplative - we will just have to wait and see.  Hopefully it will be a long wait.

Lily Kay Monkey

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