Saturday, March 29, 2014

Grandma's Sloppy Joe Gang

We would pull up to the bright white craftsman filled with anticipation. My dad could barely stop the car before Bob and I hopped out to run in to grandma's house. If you were the first there- you were relegated to snacking on honey roasted peanuts and relishes until the rest of the clan arrived. If you were the last- you were met with hungry glares and rushed hugs as you were pulled toward the dining room. It was time to eat.

Sloppy Joes at Grandma Connolly's. It was an affordable meal to feed the masses. At one point there were dozens of us. It was usually potluck- everybody contributing something, Grandma with a huge pot of Sloppy Joe's. We fought over the getting to sit at the kids' table then spent years fighting to get away from it. There are some days I'd give almost anything to be crammed around that red and white table- fighting over who gets to sit next to who. When my kids go crazy over their cousins and my husband's blood pressure boils because he just wants to have a normal conversation with his brother- my heart laughs. These are the moments that families are made of. Sometimes they are few and far between, sometimes they are weekly- they always stay with you forever. 

I remember the way grandma's house smelled.  Sloppy Joe Musk. I remember Grandma always had something on the stove and was always prepared to feed you something. That was how Connolly's showed love.  You could tell how tough the times were by the spread- food was used to fill the holes of loss. And there was a lot of loss, masked by a lot of laughter and a lot of prayers and a lot of food. 

Grandma was the most ardent of prayer warriors. She prays for everyone, for all kinds of reasons. Prayer is as much a part of her as breathing. She lived through world wars. She lived through the Depression. She lived though losing her husband, in a time when husbands were a family's identity. Yet the Connolly's did not lose their identity because of her and the strength of her family. When she was surrounded by pieces- she picked them up and carried on. She lost children and grandchildren.  She is a fierce protector of her family. 

I remember being pregnant with Phillip and feeling so sick. I would talk to Grandma on the phone and she would tell me she remembered how sick she was with my dad. She remembered having to sit on the curb and throwing up everywhere, she promised it would pass. I remember having four kids and Phil having to be gone for months. Grandma would call to check in and kept telling me how strong I was and she didn't know how I did it. A woman who raised 5 kids in the 50's after her husband died of cancer was telling me I had it rough. It blew my mind. I remember when Lily was diagnosed with cancer and I could hear her agony over the phone as she offered prayers, again her disbelief in my journey.  A woman who had lost 3 children to cancer, seen her other 2 children through multiple bouts of cancer, lost 2 grandchildren and now seeing the beast affect her great grandchild. She knew pain and she knew how to carry on. I learned how much it meant to have someone who had seen so much pain give out support instead of judgement. She never was the one to say look at me- look how much I've suffered. If her rosary beads could talk- I can only imagine the stories of loss and hope they would tell. 

Last week was such  mix of emotions. I got great news- complete response to chemotherapy. It was unexpected but great news.  We hoped the chemo was working, we prayed- Grandma praying more than anyone. I haven't talked to her in months-  hearing loss rendering phone calls more of a frustration for her. I relied on my aunt and uncle to pass along news. It felt great to be able to share good news for a change. So of course I felt devastated the next day when I got the call that Grandma had a stroke and was unresponsive. It just goes to show our family luck has been so bad- we just don't know what to do with good news. My heart broke. Yet I know Grandma has seen enough pain, she deserves to not fight her body anymore. I prayed. I am not a praying girl, but I prayed. 

The next day the kids had off. I asked them if they'd like to make my Grandma's Sloppy Joes. There was much excitement. Lily and I ventured to the store to get the traditional items. As we stood in line, I felt dizzy tired and nauseous- the typical day 3 after chemo. I knew Grandma had been through worse and kept going, so must I.  You can imagine my relief when we pulled in the garage and found friends there- delivering not only dinner for the day but lunch. There was enough food for days. It was a true Connolly feast and a reprieve from Sloppy Joes, for the day.  It was a sign- I didn't need to be cooking. 

Last night Lily was feeling down- it's been a long week- me not feeling well, everyone worried about Grandma, Phil working late. It was time to make Sloppy Joes. Lily helped chop the veggies and brown the meat. She stirred the sauce as I took breaks. The kids ran in and out, hovering in the kitchen- waiting to be offered a sample, asking about Great Grandma and the times she used to make this for us. We sat around the table and laughed, as a family. Facing another era in our history. Facing unknowns. Passing on the tradition to a new generation of the Sloppy Joe Gang.  

Monday, March 24, 2014

The Magical side of Drama

Months ago, Kiera and Lily joined a theatre ensemble called Packids.  It started last summer, Kiera expressed an interest in theatre, I looked locally for opportunities. I found PACK and they fortunately had started a nonprofit to nurture children in the performance arts- called PACKids. Kiera participated in their summer program which put on a production of Aristocats to showcase what they learned.  Kiera fell in love. She was giddy every day she got home.

I was worried. I had many preconceptions about the world of theatre and drama. I knew there were so many sides to drama. I disliked the preoccupation with pretense. I disliked the potential for rejection based on physical qualities. But as a realist- I decided to be open minded. Kiera wanted to audition for the next production. Pinkalicious. I found my niche among other parents- who seemed to be very different than what I expected. They were normal parents- helping their kids do what they loved.  I got art therapy helping paint sets. I saw the inner workings of theatre weren't much different than baseball or football or any other business- there was fundraising, there were personality clashes- there was drama. Anytime you have a deadline and a group of people- there will be drama.

Mid way through Pinkalicious, the group learned they were accepted to perform in Disneyland. I also learned that I had Stage 4 cancer. Here I was, breast cancer attacking my lungs and bones- surrounded by pink and drama. I could not have been any more out of my element. It was a welcome distraction. We were back in day at a time mode and I figured things would work themselves out. Before I knew it, the Disney performance was becoming a reality and we had to make decisions. Decisions that aren't easy normally- complicated by not knowing how I would feel, if I could travel. Not wanting to put down deposits and lose a bunch of money if things went south while we were trying to go east.

So we made decisions. We decided to look at it like a wonderful opportunity for a family vacation. Like anything else- how you approach it can make all the difference. We chose to try and be positive. And hope that it would all work out. So when Kiera came home rehearsal, after rehearsal grumpy and down- I began to wonder if this drama thing was going to work for us. I would hear Phil reciting over and over- leave the drama on the stage.  With 3 girls- we see our fair share of drama and them trying to find their way. I constantly try to find the balance between real and perceived and the magic of make believe. Sometimes when faced with the bleak realities of cancer- you need nothing more than some faith, trust, and fairy dust. Kiera was seeing that Neverland had some shadows.

Kiera and I sat and had a long talk. We talked about "paying dues", something I was recently told we just had to do. There seems to be a lot of paying dues in theatre. There is a lot of paying dues in life. It sucks when your perspective changes because of loss, experience, cancer. I've paid more flipping cancer dues than most humans and those dues bought me a role in life.  It sucks when your priorities change and everyone around you is consumed by trivial things that you only wish could fit on your list. But then you smile. And it was in the middle of this talk it occurred to me. Cancer taught me to be an actress years ago. It taught me to fake it til you make it. It taught me sometimes you just have to plaster on a smile and make it the most believable smile ever- filled with words like- I'm fine, I don't need anything, I feel good. And pretty soon the smiles feel real and lead to laughs and sometimes you laugh until you cry and then you just plaster on that smile again.

 Life is not fair. There will be roles that you deserve that go to someone else. There will be roles you get because someone just wants something from you.  There will be lows and highs and great journeys in between. But each role prepares you for the next role. Life experiences that sucked away opportunities will prepare you for THE perfect opportunity and you will have the insight to recognize it and not wonder if. We are to the point in my journey that I cannot DO this FOR you.  I simply do not have the energy to fundraise or make this easier. I cannot be the class mom right now and garner all the connections to make this journey easier for you. But I can cheer you on and believe in you and know you will do it because you love it.  I will love you no matter what. If you fall off the stage, sing off key, miss a step. I will help you up, take you to voice lessons and tape rehearsals for you to practice later- knowing full well the routine will change 5 more times before the performance. I will help when I can because the day may come too soon that I won't be able to help at all. You will have to work hard and you will be rejected and you will get your turn in the spotlight. And when it stops being fun, IF it stops being fun- then you move on to the next great journey because the things you learn now will help you then. We hug through tears. Our moment of introspection needs to be cut short- there is too much to do to get this drama show on the road.

The weekend before we leave, is drill weekend. Despite foregoing one of the chemo meds the week before- with hopes that I would feel better for our vacation- I was exhausted and my head hurt and my throat was scratchy. By Sunday a fever started. There was too much to do and between checks by my neighbor and texts to one of my mutants for advice- my fever hit the point I had to call the oncology nurse. She was amazing and did everything she could to help me avoid the ER. There were several calls, several attempts to bring the fever down- each call with a new fever limit that I could not go beyond before going to the ER. When it spiked to 102.3, my neighbor packed me up and got me ready for an afternoon in the ER. I called the onc nurse, she told me if I wasn't in the isolation room in 15 minutes to call her.  I called Phil, who was really excited to be leaving a weekend of work for the ER. He wanted to know if I could wait until he got home to assess me and I just said I didn't care if he went home and changed but I was on the way to the ER.  This sometimes happens when you don't communicate how bad things are. Kiera meets me downstairs- the little girls had spent the morning next door and she looks terrified. Phillip keeps trying to hug me and I keep telling to back off the sick momma. As I leave, I tell Kiera to stop worrying- she was going to Disney no matter what. The thought of missing them perform just about overwhelmed me- so it is not an option.

We get to the ER and my neighbor hands me off to Phil. He hugs me and says- damn you are hot- which under any other circumstances I would have really really appreciated. The waiting room is a ghost town. This is unheard of. I think for a minute they must have moved the waiting room because I've never seen it empty so this cannot be it. Then I realize my angels must be looking out for me. Phil sits me down and attempts to check me in knowing little of the day's progression to this point except that I and chemo a week ago and I was damn hot. Yep- I was 102.8 by the time they took my temp in triage- which didn't seem possible considering I think my neighbor had every single vent trained on me and set to arctic blast.  That buys you a quick trip into isolation. yaaay. Nurses flit in and out and supply us with caps and masks. Phil and I laugh at the ridiculousness of the caps- because we have no HAIR. Protocol the nurse tells us.  As she gets the supplies ready to access my port- another nurse comes in and starts yelling out steps as the first nurse repeats what she says. I pull off a mask and ask if she's ever done this before. I don't want to offend her but my mutant friends have horror ER stories and I'm pretty sure one told me to never ever let them do it. She laughs and explains they have a new protocol that requires them to do this- she's accessed hundreds of ports. I felt better until she accessed my port and it was still sticking out. Phil kept rolling with the one liners. He finally explained to them I really was sick- usually I am much funnier in the hospital.

5 hours later, some nasty potassium drink, a bunch of bloodwork, liters of fluid - the culture comes back- there is something growing, most likely strep. I get a bottle of antibiotics and potassium and am told to report to my oncologist in the morning. The waiting room is now packed.  Not exactly how we planned it- but we were going to be there the next day for my scans anyway- which apparently strep does not get you out of.  The only thing I was banking on was feeling so crappy that I would be able to sleep through it.  That and ativan. Lots of ativan. I instruct my oncologist that I do not want to know the results of the scans while we were at Disney- that we could just meet when I got back. What if it's good? Nope- not thinking about it until we get back. I was going on chemo vacation. Not worrying whether or not tumors were shrinking or growing or which ones were and which ones weren't.

We were packing like mad people the next day. Not giving the girls' bags the usual careful inspection we do- mostly worried about costumes and medications- which require an entire carry on. Yet during the process I get a call from the hospital. I don't want to answer it- but have to since the cultures determine which antibiotic is best. Its my nurse. Strep was confirmed, I'm good to go with the antibiotics I'm on and she knows I don't want to know about scan but she wanted me to know there was a complete response. Have a good trip kiddo, I'll see you when you get back.

My eyes well up. Jen usually asks questions like- how complete- what does complete mean to you- because my view of complete may be different. Complete where- complete how- did you see the completeness of the response? What about the bones? Does it just mean everything shrunk? But Jen put away the questions- it was good enough news she had to tell me. It's a relief and I decide to not think about it until we return. Right now we have to focus on getting team Mallory off the rock.

The Mallory clan is a riot in TSA. Between the diabetic supplies, insulin, needles, sites, syringes, glucagon, test strips, extra sugars and Lily's meds and emergency shots and now my meds- it takes a small suitcase. I am being pat down- I remember to point out that I have a port and a prosthetic breast.  I look over and there seems to be problems with the kids. We expect Phillip to get caught up because of the pump- it is a fairly recognizable device now days- but off all the things TSA is briefed on- insulin pumps seem to confound them. When I am done, I rejoin the suspects.  Apparently Lily and Kiera both had packed scissors in their carry ons. Scissors. In their carry ons.

Phil- why on earth would you pack scissors?
Kiera- I though I might do some crafting.
Phil- Crafting? You are doing 2 performances and have Disneyland at your disposal and you thought you might take a break for crafting?
Kiera- yeah. That and toys usually have to be cut out of boxes and Lily hates tags on clothes.
Jen- That is actually a good point. Next time pack them in suitcase.

We make it to California. All meds, Mallory's and scissors in tact. Every trip- we have a child that acts out. Phil has a great lecture he gives about being lucky to be there. I feel lucky to be there. I feel so lucky to be with my family, to be making the trip together and getting to see the girls perform. No one fell off the stage. I didn't notice any missed keys or missed steps. It was probably because my eyes were completely mist- over. This what life is about. Life has Drama. We need to know the difference between real and perceived. The difference between what is true and make believe. And sometimes a little make believe takes you away from all the tough stuff- if only for a half an hour. That is what Disney is about- smiling and carrying on. There are not employees- there are Cast Members. The icky stuff stays below the park in the tunnels and behind the scenes. Everything else is magic. That is what theatre is about. Sometime you have to work at smiling- whether its for an audience or a friend and in return you may get applause, or a smile or a laugh. Sometime you get a tear or a shout. It depends on what kind of drama you choose.

I am so proud of Kiera and Lily- despite only a few months of paying dues- they did remarkably well! They had fun. They smiled. Later- I reviewed my pictures- mostly out of focus and not very good. I was sad for a second but realized that they were blurry either because of the tears welled up in my eyes or because I was watching and snapping pictures. I was present. I saw each girl pick a person in the audience to smile at and that person was me. And they will always be able to say- remember when I performed at Disneyland. And we will always remember the magical week we had together-          smiling and laughing together.
                                          That was the Magical side of Drama.

Friday, March 7, 2014

A Team Effort

I am very independent. I am learning to work within my limited health and it's not easy. BUT the alternative is to give up and that's not an option. Let me be clear- choosing not to do treatment is not giving up. Giving up is merely saying it's over and losing hope.  There's always hope, even when all the odds are stacked against you. I am one person and if my journey makes someone else's journey easier- then it is a success. If I give my children the foundation and tools to deal with the craziness that is life- then I've won a battle.

I've always known that it takes a team to make a family work. Different teams have different game plans- and what works for one team may absolutely NOT work for another- but the key is finding what works. In the past- I handled most of the kids' doctors appointments with support from Phil. Since the newest cancer development, he's taken on a lot of the appointments- either going with me or taking the kids.  It's tough because I feel like I'm being pushed out of the loop and Phil swears he's doing it because my solo job right now is to kill cancer.  He taught the kids one of his famous concepts- it is important to kill something every day, even tiny to maintain proficiency.  This always cracks me up coming from the guy whose call sign is BUDDHA.  And before any activist friends get their robes in a bunch-  sometimes he just has the kids wash their hands- because after all we are killing germs when we do that. Anymore I'm usually told to go sit and kill cancer.  Last week Lily chased a fly around the kitchen for a few minutes then slammed her hand down on the counter. Her eyes got wide- what do I do? I can feel it wiggling. Phil placed his hand on hers and slammed down- you maintain proficiency.  Kiera bounced up the stairs last night after a late rehearsal and declared she meet proficiency today in the garage and that cockroach was huge. I think more proficiency needs to be directed at the weeds in the yard. Yet in our world- cancer will be our enemy and it is important to try and maintain perspective- and proficiency in battle.

Monday was chemo lite. A friend asked last night if Phil goes to every single treatment. Yes. I am lucky enough to be on a once every 3 week schedule and we are hope hope hoping it's working- because it's manageable. I am lucky enough to have my best friend beside me. I am lucky because I don't have to ask him to be there- there is no other place he would rather be. He is taking a more active role in even my treatment plan which is funny because I still know waaaaay more than he does- but he does have a good perspective.   Saturday we sat in the car on the way to soccer and Phil says- I think we should skip the abraxane this time. We are quality of life people and you need a break.

A lot of it is that we are going to Disneyland(I KNOW- major excitement- Lily and Kiera are part of a performance ensemble called PACKids that got accepted to perform and do workshops at the big Mouse House) Phil doesn't want me feeling crappy because that will make everyone feel crappy. So we ponder and worry and know that I am due for scans and my oncologist said a break was fine- that the protocol calls for scans after 6 rounds and evaluation. So we agree- it might be nice for me not to feel entirely exhausted and icky for the big trip.  Even little decisions are hard. There are no right or wrong answers. Most of it is just trying to fight your way through the jungle and do the best you can. I don't want to feel crappy yet I don't want to stop if its keeping the monster at bay. I want a break, but I don't want to give up ground.  The funny thing is- the hemming and hawing is all about one of the 4 meds I get regularly- it just happens to be the one that makes me feel the worst. So we decide to take a break. But that's why we are a team- Phil is looking out for me- for us and we face this stuff together- I couldn't imagine it any other way.

In the same respect I've had women say they would have succumbed to cancer years ago if they had to sit in the chemo bay with their husband. The support job is a tough one and not everyone is cut out for it. We need to know our limits as patients and as supporters. And my wonderful supporter took a trip down to nuclear medicine to schedule my PET scan while I was killing cancer cells in the chemo bay. Its a good thing I take anti anxiety meds before hand because just thinking about scans makes my blood pressure sky rocket.  It is a delicate balance trying to fit the urgency of various appointments into the necessity of our routine. A balance between taking and picking kids up from school and activities and what they are willing to miss for their appointments. It's one of the reasons foundations like Make A Wish are such a godsend- kids in families with medical challenges miss out on a lot. We try so hard to balance- but it is exhausting and there are people who just don't understand. Yet for every person or 5 that doesn't, there is someone who tries to and helps lighten the load- and those are rare beautiful gems.

Some weeks, like this week are entirely centered around maintaining the current- if slightly dysfunctional health of our little family. It may be little and broken, but it ours.  Monday was chemo. We usually get there around 8:30 after dropping the kids off- we were a little early because my neighbor offered to take the girls to school. I check in, get bloodwork and then we usually wait for results- while waiting they access my port and give me some fluids.  It usually takes a couple of hours to infuse the 3 different chemos(this time only 2) and then I get a shot in my arm to keep my bones from crumbling.  And then we stop and bring home soup or salad for lunch and the kids get home from school and the lively chaos ensues. Yet this Monday there was a package waiting for me when we got home!!! It was perfect timing and made for a perfect afternoon of wrangling monkeys. Our TEAM MALLORY shirts arrived!

Tuesday was an appointment with my naturopathic doctor. I highly recommend that anyone facing medical issues go see a naturopath. If only there were true integrated medicine- but that's a post for another time. Somehow I got the appointment wrong. Oh I know how- Phil scheduled an appointment for Lil P - so we could get educated on his new insulin pump for Tuesday. Yet he had an exam on tuesday and I had my appointment and I mistook the time for his appointment as mine even though his appointment got rescheduled for Wednesday. The up side to being early to my naturopath appointment was this....
30 minutes to sit and listen to waves and breath fresh air.  I try to plan for this- it just rarely happens. Because most weeks that I have appointments, I am behind on everything else as well. But this 30 minutes was heaven. 

Wednesday was an appointment in gyn to discuss removal of lady bits. The 30 minutes of bliss Tuesday was overshadowed by the nightmare that is parking at Tripler. I was over 30 minutes early for this appointment and still was late because there was no parking. I'm so glad there are 50 pregnant stork parking spots and zero oncology spots. But I digress.  I don't care to discuss details at this time of the lady bits or the plan for their eviction- because well- the decision is still being made and depends on the PET scan which is next Monday. After this appointment- I bop home, grab a light lunch and the boy child and head back to Spa Tripler for his appointment. There is always a learning curve with new toys and this one will be no different. 
So he will have 2 sites attached to him- one that is connected to a pump of insulin and another that will keep an eye on his blood glucose, called a continuous glucose monitor. We have already experienced the troubles of an active teen and sites being knocked off so- we are going to have to find something that works- we always do. But again- another up side to a busy day of doctory stuff was some quality time with this guy!
And although it sucks sometimes because we miss out on the boring and the fun and a lot of things that just don't fit into our schedule- we find the good in what we have. I am grateful to all the volunteer team members who help us get where we need to be and make this work.  Our team works with what we have and will keep trying to maintain proficiency and win the war- one battle at a time. 

Lily Kay Monkey

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