Finding Something She can DO

We were stopped at a light on the way back from voice lessons. A man stood on the median, tan, muscled and holding a cardboard sign that said- Hungry vet. Please Help. God Bless. My instant judgment was that he looked way healthier than me.  He accepted some bills from the car in front of me and the car behind. We made eye contact. I nodded. His gaze lingered.

Mom?- Lily piped up from the back.

Yes Lil.

Why do you not give money to the homeless guys on the corner?

Yep stabbing pain through heart.  So I explained that in all fairness, he looked healthier than me. But that there are a lot of needs in the world and I decided that I couldn't donate to every single one. That I give a lot of money to cancer research and supporting families with cancer, like ours.

Is it because you are worried that he's not really homeless? She asked.

In all honesty- it makes me uncomfortable. Because it is true. I don't know his circumstances, but my general judgement is that if you are able to walk back and forth on a median all day, there are options. And that makes me feel bad. I feel like a lesson in Karma's about to be all up in my business.

Well Lil, I give a lot to charity, I've, we've raised lots for charity and research- we did big Lemonade Stands, I give to friends when they raise money for causes or are in need and mostly I donate time.  I feel very strongly that if you are going to ask for money you should DO something for it- make lemonade, bake cookies, sell tickets. We are going to go to St. Baldrick's this year, it's not on Bella's birthday this year. That raises lots of money for cancer research and we have supported lots of friends who do this.

Why can't I shave my head? Lily has tears in her eyes.

No one said you couldn't. Lily, you remember being bald. You didn't have a choice. You have beautiful hair, everyone loves your hair. You don't really want to shave it off. It takes forever to grow back. We can raise money another way.

The cavernous pit between my heart and stomach grows.  Lily is sincere. She is calculated. She thinks. She is serious.

I want to shave my hair. I want to honor you.  Now I am the one fighting tears. Well played Karma, well played.

I send panicked texts to Phil and friends who understand. Phil says the same thing- we'll talk her out of it.  I'm not sure I want to talk her out of it, but I want her to think on it. My friends are supportive. Those who have fought cancer or have kids with cancer feel the conundrum.  You never feel safe after cancer touches you- you never know when it will reach out for you again. Especially with LFS. I don't want to ask my friends for money. They have been so generous with us and our causes over the years. A friend tells me- there is no worthier cause. I am so tired of being a worthy cause But GOD DAMN IT- if we are- then it has got to go towards making changes in the cancer world.

Shaving hair isn't a huge deal. But it takes us back to a time when life was very hard and uncertain. I am reminded that time was 5 years ago. And look at her now. Look at all this hair. That time there was no choice, she had to fight cancer in order to get better. Now she has a choice. She wants to do this. I feel horrible for not being excited. I feel bad that this is so emotional for me. I feel bad because I will have to publicly be emotional. I don't like to be publicly emotional. I feel bad because I worry so much that with Li Fraumeni Syndrome- there will be other times that she WON'T have a choice. There are so many worries and here is my 9 year old- embracing the attitude of mine 5 months ago- it is just hair- it will grow back- her NEED to DO something. I remember being that kid- watching my brother get sick, lose his hair and not being able to DO anything. So I signed up to go to Honduras for community service. I remember being that daughter- watching my dad's gigantic bald head- no hat on earth big enough to cover it- save a specially tailored cowboy hat- not being able to DO anything to make it go away. So I volunteered at Children's Hospital and got a fellowship at a cancer research facility. I am that mom- who watched her child suffer- because of a hereditary cancer syndrome. So I created a group for Li Fraumeni Syndrome.  None of these things could I have done effectively without help from others.

It is more important to me to support her in her need to do something than my need not to be reminded of a time she was very sick or my worry that this won't be the last time she is bald. And I worry there's not enough time to raise as much as she could and the effort and I am just so tired. Tired of cancer, tired of the sadness tired of the immense emotions it forces me to feel over and over and over.  And as a wise friend told me- it's not about the money she COULD raise, its about her empowerment and seeing that she can DO something and that she NEEDS to do it to support you.  I know that feeling so well- not knowing WHAT to do but needing to DO Something.  If we DO something perhaps it will prevent others from having to be bald in the future. It will prevent her from HAVING to be bald in the future.

SO it's time to put the tissues in my pocket and break out the waterproof eyeliner and help her DO this. I set up her page at St. Baldricks.  We made a video so she could tell people why she is doing this, I told her I would post it on my Facebook page and here.  We talked about why. She kept coming back to honoring me and kids with cancer. I had to remind her she had cancer. She is one of those kids.  And I am Honored to be her mom.

Lily's St. Baldrick's Page can be found HERE

Trying to ...Look Good and Feel Better

I am not a girly girl. I've never been. I like some girl things. I dislike pink. Hence my being gifted 3 beautiful daughters. I do wear makeup- just not much. I've always thought there's too much more to be done than stand in front of a mirror looking at myself, covering everything up with makeup.  I would begrudgingly put a little extra effort in for date nights and outings. I will fully admit that I was comfortable enough in my own skin to generally just throw on some mascara and call it good. Maybe some eyeshadow and eyeliner for the big nights. And some tinted moisturizer and lipstick if there might be pictures.

When I started in chemo, my friend Lani took me to get a wig and brought me bags of moisturizers and gentle soaps and an eyebrow pencil. When the last of my eyelashes fell out- I was sad. It was hard enough weeks before when they thinned to the point of a big bald spot in the middle of my lid. Not exactly combover material. The eyebrows thinned and although one of the most famous women of all time- Mona Lisa will forever be missing eyebrows- that is also one of the main issues folks take with her image.

I've never thought Mona Lisa to be particularly inspiring. There is just something about eyebrows that adds expression, adds character. It adds definition. I started struggling with my own lack of definition. A mutant friend recommended the American Cancer Society's Look Good Feel Better program. She said it was really helpful since it addressed many of the new problems from chemo- drier skin, hair loss, acne. Plus- she told- me- you get one hell of a goodie bag! It's worth it- Go!

So the next round of chemo- when the American Cancer Society representative came around- I asked about it. She had me fill out a form and said someone would contact me to schedule. Sure enough- I was wandering around Walmart before Christmas when the call came.  The earliest appointment they had was at the end of January- which at the time seemed an eternity away. 

Fortunately an ACS representative called to remind me the week before- because as many things do these days- it had fallen off my radar. I had been through a few chemos yet still sported enough eyelashes and eyebrow hairs to blend in. But I knew their days were numbered and I needed some quality instruction on the matter. 

I wasn't sure what to expect. When I got to the room I was the only one there with 3 volunteers. One was a cancer survivor and two were make up specialists of some sort. Don't ask me to categorize further- it won't happen. We made small talk while we waited for the room to fill. I was surprised that it was only me and one other lady there- especially since I had to wait a couple months- but who knows. There were supposed to be more ladies there- but I'm sure that's a problem with scheduling for cancer patients- we're a fairly unreliable bunch. 

We watched a short film about the program and learned why we were there. If there had been a quiz- I would have been a star student- because I knew why we were there. The other lady there was fairly new to the chemo train. I knew this 1) because she still had hair and 2) she came full made up. I do normally put a bit of make up on when I go out- but I was going to a session where they were going to teach me how to put make up on- why show up with a painted canvas? Yep- I'm a star student. 

Then we got to unpack the bag of goodies before us. I'll admit- this was pretty exciting. It was a toiletry bag full of the supplies needed to turn my blank canvas into something a little more colorful. And all of it was mine to keep. All of the supplies are generously donated by local retailers and supplemented by the American Cancer Society. Like most non-profits- ACS is careful to partner with various organizations without specifically endorsing any. The cosmetic art supplies reflected these eclectic partnerships. 

The volunteers seemed pleased with the supplies and mentioned they really never know what they are going to have to work with. Make up is such a personal thing, sometimes they have to make do with less than optimal shades and supplies. But seeing as I was more there for the technique instruction- I wasn't bothered by the supplies generously supplied. It's way more than I have on my palette at home!  

We started the instruction and went over everything from moisture and sunscreen to the finer points of contouring and eyebrow shaping. This was the big reason I was there. I've always had plenty o eyebrows. More than enough to go around. Sometimes too much to the point of having parts of them professionally removed. Although I do not miss that- I do miss the particular definition they provided my brow.  The lady helping me was a personal stylist who volunteers her time because she enjoys helping women feel better by helping them look better. This is essentially the mission of Look Good Feel Better.  I can talk til I'm blue in the face about natural beauty and working with what you've got- but sometimes what you get isn't exactly confidence inspiring. 

When you are on chemo you deal with the side effects. At first you are taken aback by the more severe ones and as you learn to deal with those- you have to deal with the other fun side effects. My skin is always dry. Yet it breaks out like crazy after chemo- due to the steroids given to prevent nausea and allergic reactions. My eyes are puffy. Or maybe they seem puffy because my long thick lashes are no longer there to hide them. I already pointed out the finer problems with being a naked mole rat. But my skin tone has changed. It's not healthy or radiant. It has taken on that sick pallor that chemo patients get to varying degrees. 

I will admit I have been fairly low maintenance and lucky when it comes to complexion issues and this is really the first time I've had to deal with this or cared to. It does give me a healthy appreciation for why cosmetics are such a huge industry. I also hate that I need to rely on them to feel better. I am me, but I don't feel like I look good. I feel washed out and sick. I  don't generally miss having to fuss with my hair. What time I save not bothering with hair is now meticulously appropriated to evening out my facial canvas before recreating eyebrows. None of the make up specialists had any good advice on what to do about missing eyelashes- other than being a little more generous with eyeliner. And wear more lipstick so it draws attention away from your eyes. 

Although I guess people can see what I am saying through my lips as easily as reading my emotion in my eyes- but it is one additional connection lost. I find people do make eye contact less with me. Whether real or perceived- it is what I feel. Maybe I look at them less because I don't feel like I look good. By drawing in my eyes, perhaps too I can draw more people in. I never wanted to rely on make up to create me. But me is not chemo Jen- even though it is for now.  I appreciate the tools and the mission of the Look Good Feel Better program. It is about confidence and self image and those change dramatically during treatment. And although for many, the cancer treatment effects are temporary- for some they are not.  So perhaps not all cosmetics are to hide flaws, personality or physical- but a way to artfully present the way you want to be seen despite circumstances that don't allow it. For some they want to be sexy, or have flawless complexion, for others it's just enhancing their features. For me it's now a way to project myself as healthy. Sometimes that's just what you have to do to Feel Better. 

For more information on this great program- Look Good, Feel Better go to lookgoodfeelbetter.org

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.  

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.

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. 

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!

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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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.