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.

Lily Kay Monkey

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