Monday, April 24, 2017

I have NEADs.

Quick Update:

Stable, NEAD
Adrenal insufficiency

I have been tired. Exhausted. Fatigued. In a way I have not been familiar with. I go upstairs. I need to rest. I shower. I need to rest. I wake up, I need to rest.

I sit down in the chemo bay and Jacqui looks at me- You are stable-I expected you to be dancing around and happy. - I am too tired. crazy tired. my feets are swollen and my blood sugar is high.

My ankles and feet were a bit swollen when I left the hospital- 2.5 months ago. I was sure it would resolve once I was off steroids. I have been off steroids for 2 weeks. It is not better. It hurts. If I sit - they poof- If i Stand- they Poof. The kids call them WALL-E feet.  Like the movie. I was not amused. We tried rubbing, wrapping, compressing. They bruise when I put my shoes on. - it hurts and I've been watching my blood sugar- it too was supposed to get better after steroids. It has not.

Today was my last appointment with my onc. He is retiring. So It was time for me to pull out the laundry list of concerns that I've waved off as fine for the past couple months.

One look at my feet, he shook his head and ordered a stim test. I know the stim test for adrenal insufficiency because we do them with Lily- it's how we know whether her adrenals are working.

After prolonged time on steroids- the adrenals sometimes go on strike. the stim test is a blood test- they draw blood- inject ACTH to stimulate the adrenals then draw more blood at half an hour and an hour. If the adrenals work- you see a response. If not- you have to supplement with hydrocortisone. We know the drill.

Scan results- Good, good and good. Not NED. NED is No Evidence of disease. BUT we got NEAD- His slightly higher maintenance brother. No Evidence of Active Disease. They noted new post surgical changes in my nugget(but everything else up yonder in my brain is unremarkable). PET scan is not good for brain monitoring. but still we take it and I'll argue later about how remarkable my brain truly is.

The nodules in my lungs are STABLE. this is good. Heart, etc are normal- which I could disagree but for this case normal is good. No swollen lymphnodes-good.

Liver, kidneys, organs- all those bits- good. adrenals- good- this is important for the next problem.  No masses or fluid build up. I have a big spleen. splenomegaly. go ahead say it. I can't.

Bones- STABLE. They still can see the bits that are metastases- but they are not active- we hope to keep them as sleepy as possible. The immunotherapy shot I get every 6 weeks helps keep my bones strong.

Number 1 impression: No evidence of active disease. NEAD. Just what I needed to hear.

So we chat with my onc about metformin(it's a type 2 diabetes drug that is also showing to have some good results in cancer patients) Many mutants were in a study to see if it is cancer preventative(because we are super cancer prone) the prelim was good. It's worth a try. So we are trying it. It will hopefully also help with the pesky blood sugar problem.

I finish up and we head out. My phone is acting funny- it wont let me answer calls. I think it's the higher powers saying go and rest you nut. The hospital number pops up. So I rest and check messages later.

It's  a message from my onc. I have adrenal insufficiency. I have to start hydrocortisone. No worries- we have bottles of the stuff in the house until we can get back to Tripler- which will be soon since I have a new referral to adult endocrinology. I wonder if the kids endo might see me. While I am on the phone getting details- Phil gets a call that they cannot do my referral to endocrinology since the system says we have not been in the system since 2011. Which is fricking HIlarious. We sooooo have been all up in the system since 2011. I mean really- I'm there every 3 weeks. I just had brain surgery and a PET scan. Those are not cheap endeavors. Good times. So Phil spent the rest of his day off trying to fix that to no avail.

I spent the afternoon resting and covering the craniotomy scar of my newest Buddha. Lil Phillip brought him home last night. He's learned that Ross is a good place to spend his work breaks. He's been buying clothes and the occasional gift. It's sweet. So the Buddha had a cracked head- but he presents him to me and says it's hardly noticeable and I got a great deal. That kid. It was just what I needed.

Monday, April 17, 2017

Cup Theory

My cup is empty. Phil's cup is empty. The kids seem to have some left in their cups and they leave them- the darn cups all over the counter. Sometimes 2-3 cups a day.

A while back, a friend, also facing chronic illness, lack of energy and many physical complications, shared with me the Spoon Theory. The entire article can be found HERE. The essence is that each person starts the day with a certain number of spoons and for a person with a chronic disability, illness, pain,  or depression- they start the day with less spoons and normal work requires more spoons- putting them in spoon deficit quicker. Those with illness tend to try and conserve their spoons whereas normals don't give it much thought.

The explanation made sense but as someone who doesn't use a lot of spoons, it didn't speak to me. But The other night, we were out of "kid wine" aka sparkling juice so I grabbed a bottle of tonic water and a thing of juice and we McGyvered some kid wine. Kiera kept stealing drinks from the other kids- by pouring theirs into hers. Now the kids know exactly how much kid wine they get- and how many glasses per bottle. She was gauging her consumption based on faulty numbers. But it occurred to me-cup theory.

Each day we are supposed to have so many glasses of water. Let's say 8 cups. Well with chronic illness- you might only wake up with only 5 or 6 cups. This can be due to disrupted sleeping patterns from meds(steroids anyone) aches, pains, or any other reason.  You need a glass for each meal- that's 3 more. Let's round up and just say you start with 6- so you have 3 cups left. You need maybe 1/3 to 1/2 of a cup to take meds. 2.5 left. Now maybe you need to go for a walk- it's hot out- that's another full glass. You have 1.5 glasses left for any incidentals that might pop up throughout the day. You have to ration sips.  Cups do no carry over. Some days you may wake up with 5-6, on a good day 7. On a bad day- 3 if you are lucky. You can't predict it. That's the tricky part. Somedays at noon- you turn around and all the cups are empty. it just happens. whether someone took it, it spilled- who knows. you are out of cups.

Here's the great thing about cups. You can share. Generally those who have had empty cups are more inclined to share whatever they have- even though it's less than average with a friend or someone in need. If they have 1 cup left- they will give you half. Those who have never run out of cups- tend to use them up- knowing all 8 will reappear after a good night's rest. When someone makes dinner for us, helps transport kids- it preserves my cups. When we can't make certain events- it's because I've had to triage. Social interaction takes at a minimum 1 cup. There is the showering and the travelling and the smiling while saying I feel good. I've given up on good by the way- the answer is tired and I have found people ask a lot less. Others go out of their way to share their cups with us and its always people who I know carefully ration their cups. Which makes it so touching and so hard at the same time.

I absolutely hate that I have no cups or portions of cups to share right now. Every last bit goes to each day and then Phil and the kids. I know Phil empties cup after cup into mine trying to help. I still can't catch up and we are both empty. This is a problem. And then the kids do something amazing- just when you think they've drained every last drop- they reach over and dump their cup on you. Sure it is a huge mess and You just leave it because in that moment all of your cups if not literally- are figuratively full.

Friday, April 14, 2017

Making an IMPACT

It was another entirely boring Mallory weekend. Phillip had junior prom with his girlfriend(senior prom is in 2 weeks). Last week we ran into to town to grab his suits( we figured with 2 proms and graduation-) he should have something nice he owns. I got a life insurance policy my 18th birthday- it didn't seem like a great present at the time- but I am grateful for it now. Phillip worked late the night before and slept in. I tried to save my energy for the pre prom dressing and picture push. Fortunately his girlfriend's family had most of the details figured out. We also had several performances with our dance studio- Impact Dance on Sunday.

Many moons ago- when Bella and Lily were itty bitty- they took beginning ballet with Ms. Marika at Kapolei Dance and Yoga. They loved it. I loved the casual family atmosphere and the proximity to our house.  We no more than started and were put on the cancer roller coaster with Lily. Dance was a bit of normal during a terribly abnormal time. Due to her numerous hospitalizations and neutropenia, there came a time we had to put a hold on dance.  Once she finished treatment and we all knew how much she loved to dance, we were ready to pick dance back up. Lily found her love of Hip Hop. This time we were around enough to make it to recital. In that time frame Phillip was diagnosed with diabetes and kept us medically busy.

A couple weeks before recital, I sat in the car waiting for the girls. I was waiting for the results of a breast biopsy. I got the call. It was cancer. Phil was out of town- I was sitting there by myself. I did not want to be the bearer of bad news, again. I called my mom. She said no matter what it was going to be ok.

The next time is a blur- appointments- craziness. This time of year is particularly rough- it's my cancerversary, as well as the anniversary of Bob and Dad's Deaths. Fortunately April- May is so busy with school events and recitals- we rarely have time to mope over it. There were surgeries- a major trip to visit family and back to the routine. Lily and Bella were both in school and I tried to consolidate activities for sanity. They did cheer and hula. But Kiera wanted to pursue acting. There aren't a lot of opportunities on an island and I honestly wasn't ready for the audition turn downs and the politics of theatre. We couldn't afford the time committment. I also was not ready for the sheer cost of it.

Then my cancer metastasized.  I couldn't take Kiera away from something she loved and I tried to keep up with the activity. I noticed she picked up choreography really quick and she loved to dance.  With 3 other kids and all their activities- we tried consolidating- but soon enough bella and lily wanted to do soccer. Phillip was in wrestling. There was only 1 me. Kiera no longer was giddy after rehearsals. Lily and Bella were expressing their desire to do their own thing.  I just couldn't get everyone to separate activities on my own. You might find this shocking to know there is a lot of drama in drama. After being told she needed more voice lessons, more dance lessons, more acting lessons, I finally made her choose her 2 favorites. Dance and voice won out. I looked around- the most feasible option for us for dance - Impact Dance.

It's been 2 years and I'd like to say that we hadn't had any cancer hiccups this go round- but we all know that isn't true. Yet Impact became Kiera's home away from home and she really has grown so much. She dances at least 10-15 hours a week and she comes home tired but happy. I see growth in her skills and her confidence. She is great with the younger kids. So much of this is due to her ballet mistress. Yet all the instructors are equally as tough and encouraging.

Ms. Alecia sees the good and brings out the best in the girls. She is tough, fair, and expects them to work hard, yet you can tell she is no stranger to hard work and tough situations. From the beginning, she's supported Kiera and our family whether it was rides to and from class or jut a few words of encouragement. The girls are preparing for the spring recital and the studio received a request to perform at the Smurf Movie premier. Ms. Alecia choreographed a very special piece featuring her daughter who is no stranger to rare medical issues.

Life is hard. Things don't often go as planned. Yet the impact of negative, tough times, shapes us into who we are. The sayings are true. I've never met a tough person with an easy past. Everyone is fighting a battle you know nothing about. Sure you can recognize cancer patients by baldness, or a person with paralysis by the wheelchair. For every visible disability or condition, there are several you don't see. April is also Autism awareness month.

Just as many times I don't want to be seen as the cancer patient. I know many other don't want to be labelled, just understood. Easy tasks for some take huge amounts of courage and effort by others. In order to raise awareness and make an impact, sometimes labels must be applied but they are not the only things that define us.We define us.

I've always said if you can impact just one person's life for the better, you've been successful. In this time of social media and viral videos- there is the ability to connect to many, but how do we make an impact? We go back to the basics. We find what we love, we do it with passion and we share that passion with others. Ms. Marika and Ms. Alecia have done this for years for our family. I often use them as examples. You don't have to be on Broadway to make a huge impact. Both could still be performing at a professional level, but they are sharing their love of dance with the girls. They are making an impact.

Wednesday, April 5, 2017

Stretch Marks

When I was pregnant with Lil Phillip- I was prepared for stretch marks. Growing a human in 40 weeks- well there is a lot of growth involved. The skin either stretches or doesn't. I  had stretch marks- he was 9lbs 5 oz and pretty much all noggin. I just wanted a healthy baby- if stretch marks and weight gain were a part of the package, then so be it- I wasn't a swimsuit model before- no dreams shattered there.

After my brother Bob had surgery for his brain tumor and chemotherapy almost killed him- he was on super high doses of steroids. He gained a huge amount of weight in a short time. He had the wide purple stretchmarks everywhere. What skin hadn't split was so thin it was almost transparent. It was painful to look at. That was the cancer I knew. It was the ugly side of cancer. Before glitter and ribbons and dancing in ORs before surgery.  He no longer looked like my brother. For years after, I would hear or see stories of kids with brain tumors- pictures posted - all were the same bloated look. It broke my heart.

Treatment of brain tumors doesn't have to worry about stretch marks. The advancement in the past 2 decades is nothing like that of say- breast cancer. There are many reasons for this. There are many more women with breast cancer than people with brain tumors. Boobs have generally been favored over brains since the beginning of time(its a procreation thing- think caveman- big breasts imply fertility- great swollen organs that nourish offspring) The blood brain barrier prevents many chemos from getting to the tumors(one way our smart brain defenses protect our most vital organ). Whether the reason is we have better technology to detect the tumors sooner or highly skilled surgeons are able to remove even the trickiest of tumors more successfully- the survival now is much better. There is hope. I remember the complete feeling of despair when my dad was diagnosed just 3 years after my brother- I knew how that would end- but I had to keep hope. you have to. The experience with Bob, altered the approach to Dad's tumor. It wasn't any more successful. In fact we learned that radiation makes some tumors really angry.

I have never read Anna Karenina. It was the assigned reading that year in English. I would drive my dad to radiation treatments. I would sit in the waiting room, reading the same paragraph over and over or realize I was just turning pages. I think cliff notes(for you youngins- cliff notes were the wikipedia for books before the internet- kind of like when we were cleaning out my closet and I found a small tripod.- the girls were fascinated by this ancient artifact- WHAT IS IT? oh my dears those were the first selfie sticks. I think about radiation- I think about Anna Karenina- I have tried to read it- The emotional response is too great. Radiation damage is cumulative in the body. So is the damage to those who are constantly cancering.

Often our tumors are rare- we have to research fast and decide fast. There aren't standards or protocols because there just isn't enough data. I was terrified of radiation because of personal experience. Gamma knife radiation worked for me and it didn't for very different reasons. With Li- Fraumeni Syndrome- we have a mutation in the Tp53 tumor suppressor gene. Basically the blueprint for our p53 is messed up and it doesn't stop tumors the way it should. If you are curious about some of the details- there's a good post HERE about p53 mutations. One of the things it's supposed to do is mark "bad" cells so other cells can fix them- if they can't be fixed- they get taken away. Well the radiation killed the tumor cells in the toomahs in my brain- but for the big toomah we named boobie- my body didn't clean up the dead cells and then responded with swelling. In walks the need for steroids- steroids are derivatives of cholesterols that have so many functions in our bodies. The most important ones are sex hormones(estrogen and testosterone- boy and girl stuff) and corticosteroids which regulate blood pressure and inflammation. We learned tons and tons about corticosteroids with Lily monkey- her body doesn't produce enough- hence our need for medication when she's sick. We use hydrocortisone for her. It is a lower- maintenance dose. Other steroid medications like prednisone are used for allergies and inflammation.

While we watched Boobie the brain toomah- I was put on steroids- to help with the swelling in my brain. It's a balance- I wasn't having symptoms, but scans showed swelling. Being on steroids could cause other problems and mask symptoms. Ironically one of the side effects of steroids is weight gain. The worst side effects of dexamethasone(powerful steroid - 4mg tabs are green and appropriately so for hulk-like behavior it induces) can be insomnia, weight gain, horrible mood changes. I shared some of the fun side effects- insomnia( or now what my friend Row labeled it as(Insom nom nom nomia) lack of sleep partnered with the need to eat every waking second. We used to just marvel at lily- called her the carb monster. She would have rage at chemo( massive doses of steroids). I now understand. Some things you have to experience to understand. Lord help the poor soul that woke her up when she finally fell asleep.

You will notice if a group of moms are standing around- their talk will migrate to birth stories- a common bond. Cancer patients- horror stories. Teachers- Student and crazy parent stories. Anyone whose ever taken steroids- How crazy steroids make you. Like bat shit crazy. All energy diverted to not acting on impulse- i.e. strangling people who do stupid things.

So now that  Boobie the toomah remains have been evicted, I am trying to wean off steroids. The thing about the adrenal glands(2 wonderful little organs that sit on the kidneys and make steroids) Is that they are smart. If you feed the body steroids- they stop producing them. Why milk the cow if you can get it for free? SO as you go off steroids- you have to taper so the adrenals get the message to wake up it's time to work again. The longer you are on them- the harder this is. I wasn't on very high doses but I feel like I can't taper off the last bit. I had some crazy ankle foot swelling post surgery- it was so bad even Kiera felt bad for me and would help try to rub the swelling out. One of my birthday presents(besides the ever awesome squatty potty- don't judge we didn't do any of the fun you are getting old presents last year due to said toomah) was a pair of plantar fasciitis compression socks.

After surgery- after my first real shower I went to put my hair up in a ponytail, to keep my incision dry and saw them. THEM. The dark purple huge stretchmarks under my arms. Ouch. Flashback to Bob's skin. Tears. Phil- does it hurt- no, surprisingly no- not in the way you'd think. Not for vanity, not physically. But yet another reminder of where we are at. growing too fast. Steroid weight gain is a beast. I tried salads, walking, whatever- still gained weight like 5 pounds while "dieting" weight. Even talked to the kids endocrinologist- not much you can do except get off the steroids. I was trying.

Then chemo, then the flu- all times my body wouldn't make enough steroid and it needed a little help.  Finally I got down to zero. Then chemo Monday. Monday night was not my favorite. My emotions were all over the place, every single body part hurt. Even the stretch marks.  When things hurt I find and focus on parts that don't hurt. Yep nope- my cuticle- oh wait there were hangnails nevermind. Funny how with neuropathy- you can simultaneously hurt and be numb at the same time. Not excruciating pain. Just enough to prohibit sleep. So there was the insomnia.

Yesterday by orders of good friends(husband included) I stayed on the couch all day. PJ's and all. Around noon I boiled pasta for dinner, that was the extent of my activity. Daytime tv is not very entertaining. I took a min dose of steroid and felt much better within a half an hour. My sister in law called to check on me and see if I wanted visitors- if it requires getting off the couch or putting a bra on- I'm probably not visitor friendly. Phillip brought Lily home from school- you are still on the couch? You must really not be feeling good.  Nope.

Now we keep trying and hope my adrenals wake up rested and ready to go. I'll give them time. No one likes an abrupt wake up. As for the stretchmarks- I'm still here and oh how we've grown. Yes there's the 75 pounds extra that need to go. But emotionally and scientifically since we started, like scars- just extra marks on my body road map of the experiences that make me- me now. No they aren't tattoos- but they tell a story just the same. A permanent reminder of my growth.

Wednesday, March 29, 2017

I am not Superwoman.

I am not superwoman.

I'm a MUTANT- What's your superpower- a gift from Alyssa. 

I don't make cancer look good.

The pic I said I wouldn't share. Lovely. Cancer is sexy. 

I don't feel good on cancer.

I'm tired of cancer.

Cancering is our normal.

Shark bite. ooh ha ha. 
In May of 2012, after a lump in my arm came back as sarcoma- the docs took me seriously and facilitated the breast MRI for the lump I felt, which despite my high risk status- had been delayed and delayed and delayed. It was 3 tumors. Invasive Ductal Carcinoma. Advocating for myself and kids is time consuming and exhausting, but worth it. The earlier we catch things, the better chance we have to treat them before they spread.

About a year later, the breast cancer spread to my lungs and bones. I started chemo October 2013 and have been on some sort of chemo/ immunotherapy since then. The amount of money pumped into these veins would have bought our little home here in paradise outright. The life expectancy after mets is 3-5 years. Through a group online- I found resources and women with mets who are surviving for decades. Hope.

2.5 years ago, the day after Christmas, we learned there was a tumor in my brain. The life expectancy after brain mets is 2-2.5 years. Radiation is not usually recommended for mutants like me. It causes new cancers. The thing is those cancers could take several years to develop. We have to treat the tumor there before it killed me. By the time I had the radiation- there were 2 more tumors- it was the best odds. Lucky 3 again?  The hope is to live to face the next round. It totally messes with your mind.

In May, It will be 5 years that I've been cancering and yes that too messes with my mind. I've had good responses to chemo. I have been lucky in a lot of respects. I've lost my hair, had it grow back, had aches, dealt with peripheral neuropathy and a whole ton of fatigue. I'd tell you some of the less glamorous potty stories, but well we don't really need to share every-thing. My symptoms have been mild compared to what many go through. I am in the DEAD ZONE.

The Dead Zone used to be the oldest age my family members were before cancer got them. That was BC - Before Cancer. Then the timetable swivels. Now it's prognosis and progression free survival numbers. Screw the numbers. I am not a number.

I feel like everyone around me has cancer. They are not numbers.

Its hard to see so many friends suffering. I want to help. I feel limited by cancer. I go by how I feel, knowing how quick it can change and although the numbers for survival- give a ballpark idea- they do not define me or my path. I do. I know where this path ends, I just don't know how, yet.. None of us gets out alive. Life by nature is terminal. We try to eek out every last good drop while we can.

I try to stay positive. It's not easy.

I take the punches with the good turns. My good days outnumber the bad. I keep hope because the alternative is not an option. I don't hope for a cure for cancer, I hope that someday we will prevent it altogether. Just as I once hoped to lead the charge for the cure- I see my children learning, thinking, passionate about figuring this cancer stuff out. Our lives depend on it.

I am not superwoman. I am just a woman with Li- Fraumeni Syndrome and
Stage 4 cancer trying to live each day.

Tuesday, March 28, 2017

Kitchen Commander

I am a bit of a control freak. I was taught if you want something done your way, you do it yourself or shut up and appreciate the way someone else does it. I've had to let go of this. It's been interesting.

I appreciate others and their ways, but when it's my house I want it my way. ack! As I recovered, we were so lucky to have help and support.

I have many strong mutant and non mutant women friends who are like me- you would never know many were struggling- they would never say, ask for help or complain. They just do. The challenges they face are not small either. These are women who can see your struggle through the veil of strength and independence, because they wear the same veil. They like me, when able will drop everything to help without question. They see needs and fill them. They instinctively know what needs to be done, as they have experienced these needs.

tomatoes ala Monica
As I had help in the house- especially with cooking- I let the person doing the cooking put stuff where it made sense to them. Heck my kids have had specific instruction on where things go and they still don't bother- I think they seriously are trying to mess with my mind.

Periodically someone- child or guest would ask where something was. I'd laugh and yell- I am not the Commander of My Kitchen!  I relinquished command several days before surgery. Kiera, my most helpful OCD kitchen organizing child- would frown - knowing how much time we spent trying to "organize" the kitchen pre-surgery to make sure everything was easy access. I also spent a fair amount of time cooking- for the fun of it- not knowing where I'd be after Surgery. Within a few days of being home- I tested out my kitchen legs and prepped dinner- nothing fancy- homemade pizzas. I was not commander of my kitchen. I decided it was best to save energy for when my acting kitchen commanders left.

It was difficult for me to watch my friends and family work around my house. Another friend sent funds with the express direction that it was to be used for house cleaning the month I got home. Let my helpers use their energies on other things. 2 days after getting home- the bathroom needed a wiping down- it's the boy's bathroom- yet also the only bathroom downstairs. Normally I would just bop upstairs to my bathroom- but my legs were still a bit wobbly. I got busted wiping down the counter by Phil. He was pretty mad. I explained it took less effort to wipe that down than climb the stairs or ask someone to do it. I was failing at letting people help. Phil and Monica made the call- the house was clean the next day. I was closely watched so I did not clean before they arrived. My theory is- I like them to do the scrubbing- I don't want them spending time moving clutter.

I think part of it is I feel like a failure at my job. When Phil and I got married, we agreed as long as we could hack it financially- I got to stay home with the kids unless I wanted to work. So the house status, child status is a direct reflection of my performance. So the crap accumulates- instead of yelling- I take care of it. It's not always the right choice, but along the lines of picking your battles. Phil and I have never been overly social. Our house is a constant flurry of activity, yet we are not party people. For me- I hesitate because in order to have people over- I want things to be clean and picked up. Even with close friends. So I stress when people stop by. Or I hesitate to invite people over.

North shore with Ed.
Over the years - I've had several close friends who've seen my mess. Seen me at my best and worst. Seen my children at their best and worst. Our friendships survived. They still stop in. They still come to help when I don't ask. They take command of my kitchen and I've gotten better at letting them- someday command would again be mine.

 There have been many who have seen a need or a want from afar and made our lives easier these past few months and it is truly appreciated. From the edible arrangements, house cleaning, zen accoutrements, gift cards to restaurants, amazon, and care packages of cookies and fruits, homemade ice/heat packs and teas, and the traditional Connolly Junk Food Baskets. I cant thank Monica enough, she helped zenify my room and lanai- Both are now spaces that relax and I feel completely comfortable in. Her husband Tom pops in an out of the house- repairing shower drains, patching holes in the walls, fixing the pergo gaps.Grandma Sandy cooked amazing meals and snacks and cakes, I got to sit and visit. Grandpa Ed transported the girls wherever they needed to be even at last minute notice and spoiled them rotten with beach days and mermaid caves and go kart races. Bella so misses her Eduardio. Grandma Roberta spent special time with each kid and saved the days when the flu hit.
fix it crew. 

Then things get back to new normal. Up at 3 am with the insomnia- I rearranged the pantry and the fridge and freezer. After disinfecting the kitchen so much- the cabinet knobs needed some love- they got a fresh coat of paint. Kiera and I ran to Costco, We finally got to Phil's office and helped hang the art on his walls.
it's fabulous!

It's birthday season and Kiera, usually pretty high maintenance- just wanted a tutu. My friend photographer friend Debbie is embarking on a new line of fine art images and we conspired to give Kiera a photo shoot for her birthday in said tutu. Again I can't be more grateful when someone makes my life easier. After the shoot, Debbie dropped Kiera off and came in for a well deserved drink. Drinks turned to dinner- my house was a mess. everyone lived. I've come a long way and once again am Commander of my Kitchen!

Saturday, March 25, 2017

TESTING the waters, aka Catapaulting back to Normal.

I sat in the recliner in our room and watched the sun peek over our palms. Paradise. Any given day - we could be anywhere. I try to appreciate our surroundings as much as possible- you know when life and cancering doesn't get in the way. I miss my morning sunrise trips just down the road. Minutes from our house, the beach- not a good swimming beach- mostly a fishing spot and homeless encampment, but close and still stunning. The door opens- Phil peeks in-Phillip-  is hit with the virus from hell. I can hear the roar of puking downstairs. Ugh- round 5 which Rounded out our Spring Break nicely. Due to his Type 1 diabetes- he, like Lily needs to be monitored closely. This means taking blood sugars and ketones after every vomit/explosive episode. Or every 2 hours whichever comes first. My plans for today are well, shot- world domination will have to wait for tomorrow.

Blood sugars do not like to play nice during illness. Phillip's run high, which lead to ketones in the blood which can lead to coma and death. We have to be careful. This is another reminder that I am not ready for him to go off island quite yet for college. Me, not him. Me. He manages his diabetes very very well. As much as it sucks- he feels better and we all fare better when his blood sugars are in control. I begin cleaning his room in between episodes. My back hates me, but at least I know it's an- I've been cleaning for a week straight ache- not an what cancer/chemo problem is lurking type of ache.

We get through the day. Kiera disinfects her room yet again, the lone survivor, she sits at the table, a bottle of hand sanitizer safely snuggled. In the afternoon, Phillip's girlfriend stops by with chicken noodle soup and watches Barbie movies with Lily.

The next morning I am up. It will be a day of disinfection- laundry on 3 hour sanitize loads. Kiera has an eye appointment. Bella wants to make pancakes.  Lily comes downstairs, one eye pink and swollen shut with crusties. GDMFCSSOB. Pink eye. stop touching it. go wash your hands. I give her a warm compress. she sits. I call the clinic- they actually have a same day appointment. I call and reschedule Kiera's eye appointment. Oh the irony.  Phillip is on the couch- I fumigate his room with lysol and collect all bedding. Wipe down the bathroom, again. By the time I get Lily into clinic, her eye looks fine. Of course. Continue compresses and allergy meds. Of course. Dr. Jen is tired. One less set of bedding to sanitize- although it is getting washed, again. Home again home again jiggity jig..

Ok- next morning. I am up early. Back is aching. Phil is half asleep and rubbing it for me. I move to the recliner so he can rest. I could make it to the beach by sunrise. Its been 2 months- I haven't driven. I've been lucky enough to have enough help to do the driving and then the stomach bug quarantined us. Next week I will be solo again- it's time.  I head downstairs- grab a box of girlscout cookies and tea- don't judge- breakfast of champions!  The beach is a 5 min drive. A good start, with an excellent reward. I sit with the windows down and listen to the waves crash. Music for my soul.  The clouds hover on the horizon, I have a little extra time til she peeks her shiny face my way. A good start to a new day.

I get home before Phil leaves for work- proud of my accomplishment. I drove. The rest of the day is planned around Kiera's eye appointment and although I let her drive, I feel some of my independence coming back- raging back- as we spend 3 hours at the mall and finally make it home. It was exhausting yet very normalish.

Thursday, March 23, 2017


I am absolutely grateful for each day- each good day and I know how hard bad days are. There are some bad days. I have very very close friends going through much harder times than me. It breaks my heart there is nothing I can do to make it any easier on them. Perspective.

Last week, on the tail of chemo- we celebrated Lily's 12th birthday. Spring is Birthday season around here and we bounce from one to another to another. It is beautiful and exhausting.

Before surgery- I did some shopping and had tentative- although mild plans for birthdays. The biggest gift for me- being present to celebrate my spring girls and yet another milestone for me.

Weeknights are crazy around here- so we had Lily's birthday "party" the Sunday before. It was a family party- 2 grandmas, Ed, Monica and Tom joining us. The cousins were going to join us- yet their house was hit with the flu.

Tuesday night, Lily's birthday day- Grandma Sandy made her dinner as requested- lettuce wraps and baked potato soup. It was fabulous. We all ate too much- so when Lily complained later of a tummy ache- well- of course.

I had just fallen asleep when Phillip gets me- Lily is sick. And so it started. She starts to cry- I can't miss EXHIBITION.

My heart breaks. She's worked so hard on her 6th grade project. Her first thought is she would let her team down. I assure her- it will be ok. one way or another. It will be ok. We will make it ok.

With adrenal Insufficiency- Lily needs extra meds when she gets sick or she could die. Not get worse, not feel bad- she will die. Her body just does not make enough cortisol to balance electrolytes, maintain blood pressure and many other important functions. Here's an old blog about it Adrenaline Rush

I give her zofran. She vomits it up within a half hour. We start the clock- we have to keep a stress dose(3 pills) of hydrocortisone down or we have to give her the shot. I suspect she has the virus that's going around, but still her system needs help. I start my cleaning/disinfecting routine. My legs are shakey- who knows if it's new chemo shakey, tired shakey, adrenaline shakey, or new brain shakey- I have muscle memory of this routine. My sick routine. Door knobs, common surfaces, everything gets wiped down. The first load of laundry is on sanitize. The piles are formed. Lily continues to vomit. Once all down the hallway.

When everyone brings meals and offers help at the same time- I say wait. This is why. Murphy's law. Phil checks on us. I say we are going to have to give her the shot. we have a "loud" adult discussion about it. According to guidelines- if we give the shot- we should go into the ER. Like I said before- I am not a doctor- but I play one in the Mallory house. I want to give her the shot so we don't HAVE to go into the ER and explain to them what is going on and wait 5 hours for fluids and for them to figure out adrenal insufficiency and how to give her the right amount. We give her the shot and call her doc at a more reasonable hour- we've got this.

We finally get to the point where it is time. She was so brave. I held her hands and Phil gave her the shot, he's always been the steadier hand than me and she did great. Within the hour she was resting better and I felt a huge weight lifted. Just in time for the other kids to wake up, Phil headed off to work and our day officially began. Then in domino fashion- this fun virus worked it's way through me, Bella, Phil and Phillip.

Sandy and Ed leave the day following- this is how it goes. Feast or famine. I call mom- she's a Lily whisperer- Lily needs the attention. She begins her own care and cleaning routine, one that I am very familiar with. I was always the sick child- flus, strep, mono- if it was going around- I got it.  My stomach didn't feel right. ugh. I head upstairs to try and rest and hydrate for the coming storm.

We are officially sick of being sick. Anyone with chronic illness should be exempt from this nonsense- although it gave me a healthy appreciation for how good I do feel day to day. I got sick the afternoon of Lily's Exhibition. It was every bit as miserable as it looked. She got cleaned up and made her presentation. I was calculating the hours of puking left and  Mid exhibit- Bella was hit. The troops returned home. I was sick to miss her exhibit and so sad. When Kiera did her Exhibition project, parents had a bit more of an active role- this time- it was very much student directed. Other than proofreading one letter and watching a run through of her skit- I had not been involved. I really wanted to see her hard work. I heard the play by play each week.

After a day of rest, I am better enough to watch the videos of her presentation on Gender Equality. A very tough topic and one near to our hearts. It's hard to believe this was a week ago. Not only do I have the surgery time warp- now we have this virus time warp- Losing weeks. Yet here we are- sick of sick. 

Tuesday, March 14, 2017

The Dance - Healing Update

I met with my oncologist yesterday.

I am not an oncologist. But I like to play one in the Mallory House.

We- Phil and I had been talking about chemo and what I wanted to do. We are just a month out from brain surgery. I "skipped" chemo the week of surgery. I wanted to feel stronger before starting, but know that with too much time in between- we are giving cancer a chance to grow. It's a careful dance.

Kadcyla is the "chemo" I am on. It is a targeted monoclonal immunotherapy drug. I call it chemo because it's easier. It is given by IV and takes only about a half an hour to infuse. The bloodwork and mixing of the chemo take another couple of hours each visit to the chemo bay. With Kadcyla- chemotherapy molecule is attached to a known marker that my cancer has. Like a lock and key- the meds only attach where the marker is. It is more specific- less icky side effects because less normal cells are being hit with meds the chemo sticks to the cancer cells and hopefully stops it.  "Traditional" chemotherapy is slash and burn. It damages good cells too- hence the really sick and hair loss issues.

Back to it. 
So I warned Phil that at the doctor appt- our oncologist(since Phil is at every appointment and every chemo possible- I try to say our- don't know many others who have such a great partner through this) would congratulate us on pathology, recommend a PET scan, and walk us over to chemo. I also told Phil that I wasn't quite ready for chemo.  That is what he heard and as my advocate will respond to any of Jen's crazy doctor's office antics with reminders of the "plan".  Side effect wise- grand scheme- compared to most chemo meds- Kadcyla had been "easy". It's working, I get tired and achey- but seriously- big picture- I'm in the over 40 club now- most have similar complaints. I also get a B12 shot- because well it's good and a shot called Xgeva- that is also a monoclonal antibody and uses the whole lock and key idea with a different marker. This one is an injection that helps keep my bones from breaking- not necessarily - "fighting" the cancer cells. This is the dance- keep the body strong. The cancer cells that set up shop in bones- ultimately spread- causing pain and breaks- this shot will hopefully delay that. Dance monkey dance.

In the hospital a month ago. 
One month healing progress.
The biggest problem is we are still "fighting" cancer on multiple fronts. The chemos do not really go into the brain. Which is why I had gamma knife radiation years ago and surgery a month ago. I am responding to Kadcyla very well and it is keeping the breast cancer cells who set up camp in my lungs, bones and other areas in check. We are dancing with the devil. I am dancing with the devil. As long as he/she/it understands it's my body- we coexist and I do what I can to remind him whose body it is. I keep my body as strong as possible- and here is the tough balance. Surgery of course is a hit to strength. If you tax your body with too many spots to heal, sometimes it gets overwhelmed.

Our oncologist- congratulates us on the pathology and recommends the PET scan and asks what I'd like to do about chemo. We can do it today while we are here- come back later this week or next week- but really he doesn't want to wait too long. Which is what I figured. And there are many
worse off than me - it's best to keep one step in front of the devil with this dance. I may not be at my strongest- but I have extra help this week and next week is my birthday and spring break- Ok I'll go. I'll go. I'll go. I think of all the women in the UK or with insurance that wont cover this med. I think of how those spots on the PET scan look when the disease progresses. I think that overall- it would be nice to have a break but it's gonna be nicer to be around as long as possible. So I say ok, let's do it. Phil looks concerned. Then our onc says he is going to retire in April. GDMFCSSOB.

So we have to get things in order. He asks Phil about his new job and my forever humble husband says it's going well- a lot to learn and different responsibilities. Beloved onc asks if it is a liaison position. I wait to see what the Buddha says. The Buddha says he is the commander and explains. That's my guy. No pomp there. A little bit of pride(mostly mine) and a whole lot of out of our control circumstance. Ooh now they are talking about me- Phil was hoping I'd get more of a break from chemo. Beloved onc says- we had a break, we don't want to wait too much longer- this is the advocate part. Beloved Buddha says he just hoped I'd be a bit stronger and more rested than I am- aka doing better since I came out of the gate so well- he didn't see the plateau coming. (I'm still not driving, I don't get out much and I tire super easy)Buddha say what? I am doing great. He knows this and tells me daily- and he sees me when the tired and aches hit. Still Better than expected. So it's that gut check and the waiting for the other shoe to drop fear. Can we count beloved onc leaving as the other shoe?

We decide to let the availability of chemo med decide my fate. I know it will be there- I'm on permanent chemo orders- regular delivery. Every 3 weeks. They probably still have the dose I missed from before surgery. I know Phil is worrying about how I'll feel, worrying about the coming week, worrying about work. I tell him he can head into work- I'll call a ride when I'm done- I know he won't leave. Sometimes I hate this dance. I settle into the uncomfy chair- residual catholic guilt flogging-perhaps- everyone in the room is worse off than me- I reset my frame of mind. I am doing good. We are keeping one step ahead. Comparatively I feel better than I should or have. Let's do this. He texts his mom and Ed. They will head in to pick me up. I tell him he can go- he won't go until I am in good hands.   Barb stops by with cookies. She was afraid I would forget. I think everyone has my number. I appreciate everyone looking out for me.

I will get tired, but that's not new.
Handoff complete. 

 I'm taking advantage of the help I have and my mom will be here as long as needed, definitely here for spring break and my birthday next week. That's what moms do. That's why I do this dance.

Thursday, March 9, 2017

Rest of the Day

Today is a tired day. Like tired tired. I could hear the kids getting ready for school, but was powerless to open my eyes. It's Thursday- which are Phil's long days at work. I vaguely remember booing when his alarm went off at 4 something.

I've been weaning off the steroids, but still need to meet with docs to see what they would like me to do- the appointments keep changing (they keep trying to schedule Thursday and well they are long enough for Phil. )And well we were so excited about the pathology at our last visit- we forgot to ask those relevant kinda things.

I've tried to scale back pain meds and well- am not ready for that. They are doing their job and by scaling back- the aches prevent me from sleeping and that's not good for healing. So one thing at a time. Some of the numbness around the scar and that side of my head is wearing off. It's not painful but definitely a weird feeling.

The good thing about older kids too is you can text one of them to bring you coffee and they do. And they put waaay too much sugar in it so it's a treat.

It is also picture day at school. Oh I remember the year mom had to be in to work early on picture day and dad tried to do my hair. It was a disaster. I ran down the street to my friend Melissa's, her mom Mary fixed me up- yet in the rain and run home and to school- I ended up at square one. Which is how I looked every day and how school pictures should be.

Bella pokes her head in with her hair brushed(this does not happen on a daily basis)it's also  pulled back and she is in a dress. a dress. Bella.  We need picture day more often. Phillip is yelling for them to come on and they are off to school. Kiera brings coffee. Can still barely keep eyes open. She chats with me for a bit and she too is off to school. I now will keep the couch warm for the remainder of the day.

Lily Kay Monkey

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