Insufficient Breaks

Ah Life. The ups. The downs. The more downs.

Lily was looking for pictures the other day and stumbled across the blog. She read quite a few and we sat and talked. She had lots of questions, she didn't remember a lot. Part of the reason I started blogging was a journal-now reading back- I don't remember a lot and then the words crash around me. It's not easy. We've kinda dealt with a lot of shit. It's been tough to write lately- finding time, emotional energy and not be negative. Although as a good friend reminded me- you can feel the toughness and you don't have to be happy about it. Happy about it has been elusive.

Lily is doing the best of all of us right now. She and Kiera remind me a lot of me at those ages. Bella is truly a unique creature and dealing with being 11. Being 11 kinda sucks- in case you hadn't heard- she will tell you. The snark is strong with that one. Lily reads and reads and reads. real books. she prefers them to the kindle or electronic versions. I understand. She says she just likes the feel of the book and turning the page. We visit the library, a lot. She has friends at school and seems to be really happy.

Kiera is struggling with the challenges of the IB program as well as the time requirements for dance. It is so different than where we were with Phillip at this point. She is realistic and although she loves to dance- she does not think she wants to make a career of it. I just hope she will continue to dance, she would like to start a club at school. She is talking about withdrawing from classes after their Nutcracker performance. She really stepped up and became the little mommy for us last year, I really can't argue with her wanting just to have time to be a teen.

Bella is 11. not a little girl - not a woman- plain ol trying to figure things out. We just extricated Lily from this awkward place- or she grew out of it- so we apply miracle grow and hope for the best. Tomorrow is her arm MRI- finally-hoping to rule out some of the anxiety around that thing.

Dobby is like having a toddler. He eats things he shouldn't, poops where he shouldn't and needs lots of attention. Of course everyone gives him attention in their own way and that amounts to several hours of circus dog training for him each day. I walk him a bunch which is good for me physically and emotionally and he enjoys quiet naps in the sun while the kids are at school.

My sweet Phillip. He turned 18. And magically did not instantaneously gain the wisdom of life that adulthood promises. After being in a relationship for a year, young Romeo and Juliet were told they could no longer see each other. Although I don't agree with how many things have been handled, we absolutely respect her family's wishes. We lost part of Phillip last year, I thought it was me, I remember all too well being surrounded by sickness my senior year. I practically lived at Phil's house that year,  But it wasn't about me. Phillip was in love. All focus was lost, he started to lose himself in the relationship. His grades were the first indication, then he didn't apply to some colleges we had talked about, he stopped talking to us, he wasn't careful with his blood sugars- which made him angry, a lot.  He was going through a pretty normal thing with a bunch of not normal. We were trying to cope with a pretty normal thing with a bunch of not normal. Just when I'd see glimpses of him and think he was moving on, he'd slide back. My poor child - cursed with his father's loyalty and my passion for saving lost causes.  Oh to be able to share the insight on that and have him hear me.

Parenting is not for the weak. You lay the foundation and just pray it holds. I wish I could prevent him from heartache, but these are the experiences that break the heart wide open. With the right healing- the capacity for love will be even greater.

My adrenal glands just aren't recovering. I try to manage physical and emotional stress the best I can(I have a new dragon egg smelly thing- as the kids call it- a diffuser for relaxing oils)- we are the opposite of relaxing- even on our most laid back day. The night after my last chemo- I went into adrenal crisis.

I thought it was a headache. Which stresses me out- it could be the weather, it could be the stress- it could be more. So I retreated to my room with oils, tylenol, and ice pack then a heating pad. Within minutes the rest of the available Mallorys were sitting around, playing with Dobby, rubbing my feet. Everyone knew something was up. My stomach started hurting- again catch 22 stress- then the vomiting began. I tried zofran, I tried heavy steroids, everything came back up. I felt horrible. Phil decided I was not in fact contagious and needed the shot. He tried to take my puke bucket away. I cursed him- I think it would have made a great remake for the Exorcist. He finally gave me the shot, and we headed to the ER.

Of course the ER didn't know what to do with me, we enlightened them. It was slow going. The shot kicked in- iv zofran was lovely and fluids helped. I upped the steroids the next few days and then wean back to my regular dose. The dose changes are always tough emotionally. And life goes on and I make dinner because Phil has extra work to make up for the unintended day off. It's a reminder to take better care of myself for everyone's sake and well adrenal crisis really really fricking sucks.

My adrenals are quitting, my platelets aren't bouncing back- nothing transfusion worthy- just bloody noses and bruises. Like anything- I know so many who are far worse off- so I dare not complain. But my gut says we need to strengthen my body again. So after meeting with my oncologist and some thinking- we are holding chemo- the idea was until we do a PET scan. IF there is no progression, or evidence of active disease- we can evaluate and come up with a balance. But of course the PET is not available until the week after Thanksgiving- which would mean skipping 2 treatments. No one knows the right call. SO it's mine. Choose your own adventure cancer style.

SO I go with what I know versus what I wish. I know that I have aggressive cancer that keeps trying to find a way to thrive. I wish No evidence of disease meant I didn't have to worry- I will always have to worry- it's just at what level. I know it could be worse. I wish it was easier. I know I am tired. I wish I wasn't. I know that chemo is keeping the cancer at bay. I wish it didn't damage the other systems in the process. It's time to mitigate damage before it's too late, while not letting the cancer get ahead and this is what managed care is. It's not a cure. Other things go wrong, you have to roll with it and hope to keep ahead of all the bad things. And sometimes you just need a break.

So I will probably head to chemo next week and pound steroids like a world champion cyclist. Thankful for a little break, help the kids with the big ones, wait for the PET and hope for the best.

Healing

Being in the hospital is one of the most torturous experiences.  By all recent comparisons, this stay was a 4star excursion. I had my own room and Phil stayed the nights with me. Not the romantic 2 night get away that I have been dreaming of, but we survived it and that's all I ask for these days.

I absolutely do not know how non medically savvy people negotiate hospitals. I feel like at every turn I am telling someone how to do their job in respect to me. It's exhausting- this continual advocacy. Some say it's because we are in the military health care system, but I think that is a side effect of a bigger problem. Jaime sat, visiting with me in my luxurious suite with a perpetual look of horror as I explained this was the nicest room I'd ever been in here at Tripler. She asked when the last time I was in a private hospital was. Never. Not me anyhow. I've visited friends in private hospitals. I can overlook the bells and whistles for quality care. More often than not, quality care these days feels like it merely doesn't kill you.

The preop visits to the surgical center usually horrify me. They are aggravating in that not only are you a bundle of nerves- but you are sitting in a room with other nervous folk waiting, waiting waiting to tic items of a checklist that cumulatively take a grand total of a half an hour, yet the visit drones on for close to 3 hours. You don't meet with any of the people you will be seeing the next day and they always deliver disappointing news like- you cannot eat after such and such time and oh- be sure to stop by the pharmacy to waste another hour of your time to pick up some nasty concoction to drink and prepare the bowels fro surgery. Oh crap I forgot about the bowel prep. More so I filed it away under something one doesn't want to think about.  To add insult to injury you have to start cleaning the pipes at 2pm the day before.  So the last dinner turns into last lunch and each bite chewed is chewed with the dawning realization that it shall be but a memory in a mere hour or so.

Whether Jaime was the good luck charm or slathered over my chart was some cryptic have mercy on this poor woman who contrary to what is IN this chart does NOT enjoy pain- the day progressed fairly painlessly. I even managed to squeeze in an annual well woman exam while Jaime waited for my pharmacy number to be called. Because amidst all of the appointments in the past month leading up to this surgery- it failed everyone's notice that I was overdue for a pap. Either way- it was taken care of.

We arrived home, I drank the lemony flavored make you poo goo and dreaded the next events.  Since I react to all kinds of things- I don't do the weird pre surgical wipes which cover you in a bacteria fighting film and supposedly cut down on post op infections.  I have theories on this and infection control in general- but I will keep them to myself. I generally am relieved to be first case as the assembly line processing of the ORs always makes me wonder. Either way- I shower night and morning before surgery. This whole not having hair thing means less toiletries for the hospital and not having to worry about crazy post op bed head. The sun is still soundly asleep when we begin our trek to the hospital. And less shaving for the OR team- woo hoo.

Despite my several pre op appointments and pre surgical arranging- no one is qualified or has the appropriate supplies to access my port in the OR. After not 1, not 2, but 3 IV tries- I have an IV barely hanging on between my ring and pinky finger knuckles. Obviously it doesn't matter that all blood draws will have to be below that( I guess out of the webbing between fingers) and I have an entire arm that cannot be used due to lymphedema risk- they have fooked away my good arm's worth of veins. It is too early to call the VAD team or wander down to oncology and just have them access my port. I shake my head. Fairly unacceptable. Had I not gone over this with pre surgical people- I would have just gone into oncology and had the damn thing accessed the day before. Instead I now have a greenish brown zombie arm as the multiple vein blows heal.

The only reason I dealt with it is because an IV is needed for versed. Versed is my favorite and the only reason you can get me anywhere near an OR. Within a minute of that injection you are waking up in recovery and everything is a little achy and foggy.  I woke up with 2 IV's. Both of which came out within hours. One as I tried to sit up, I look down and blood is dripping out of my hand and there's enough meds going on that you just look at it like- hmmm that's probably not ideal. That is another pretty green brown zombie bruise now. The other had clotted.  I spent many hours that night as a nurse whacked my hand and arm trying to find a viable vein- consistently ignoring the one I pointed her to and finally after Phil kicked her out of the room and another nurse came in- did they get blood from the vein that I had pointed out. Advocacy is exhausting.  I had decided then and there I was out of there as soon as humanly possible. Saturday afternoon was the earliest they would consider letting me out- so by Saturday morning I was asking to leave.

Any surgery sucks. Abdominal sugary has it's own set of not niceties. Standing up sucks. Walking sucks- as things get moving again- it most definitely sucks. Waking up and feeling like you have to sneeze sucks. As you try to prop yourself up to grab the pillow to hold against your tummy so your intestines don't get blasted across the room. Ah good times.  The first day home alone with the kids- I decided watermelon sounded good. So bella put the watermelon on the counter for me. The leverage needed to slice said watermelon was more than I had- so I asked Kiera to please take care of it. I went upstairs to nap- because on narcotics- leaving kids downstairs with a big knife and a watermelon seems pretty acceptable.  After a short nap- I return to Kiera- several bowls of weirdly sliced and crushed watermelon- a mop, a sticky floor and her brother sitting there eating watermelon while she giggled. Later we find out that she ignored the watermelon and it rolled off the counter and splattered everywhere. SO she put the smooshed watermelon in the colander and rinsed it. That melon is what her brother gnoshed on. Hence the giggling. She was on her 3rd round of mopping but from what I can tell- In true Gallagher fashion- she was just pushing watermelon juice around.

Today has been a week post surgery and I am starting to feel human again. We've had a couple hurdles. I'm on blood thinners(fun nightly Sub Q shots) and antibiotics.  I can lay fairly comfortably, sit fairly comfortably and stand up pretty straightish. I am very tired. After 4 c sections, I knew what to expect and my expectations were a little high. This led to many a melt down while Phil assured me I was doing fine. A 15 minute phone call should not require an hour nap- I blubbered. I am a human paperweight I cried as the fan blew a few of the girls get well cards around the room- and I'm failing at that. I'm very antisocial post surgically. It's probably best. I know that next week will be better and the week after that better and then back to the chemo routine. And that absolutely sucks. Getting better to get knocked back down. And then the sun comes up over the palms and the clouds drift by and I feel good enough to sit outside for a half an hour and enjoy it. And the kids give me hugs, gentle, careful hugs and kiss my stubbly head and that's why we get up and do it all over again. These wounds will heal and hopefully lead to something better.

Round 2- Monkey Business and Special Gifts

I feel like I should have a scantily clad woman prancing around with a card.  In the old chemo days- it was half naked Lily- tossing the purple robe to the ground and dancing around the chemo ring in tap shoes.

Cancer is cumulative in every way. In a Li Fraumeni Syndrome family- you can't even imagine the worries on multiple levels for many family members. While I was undergoing a lung biopsy- I had 2 cousins going through the cancer drill too. One has been diagnosed with early stage breast cancer.  I have a non LFS aunt battling pancreatic cancer and who is on abraxane too. We compare side effects like most people compare wines. We do a little of that too, sheerly for coping with side effects, of course. I wouldn't even consider a wig until we had an early 3am text session. She had started her wig collection and gave me the name of an online shop. (PaulaYoung.com- fabulous prices variety and quality BTW!) I think she wasn't even considering shaving her head until that chat session. Yet as much as I hate that cancer brings us together in this way- that's what families are for- they share the same gene pool or are associated by marriage and you stick together.Then there are the friends who are with you in experience and spirit who send you lots of happys to make the journey more comfortable and fun.

The up side to going to chemo early in the day, is not waiting long in the waiting room. The down side is traffic. Yet I have very special friends D'ana and Courtney who keep me in theme chemo socks- and Chemo 2's theme was Monkey Business.  This is a true gift from experience and most people would say- socks in Hawaii? Well I wear slippahs to the hospital and it's like below 30 in the chemo bay- so the snugglier, the better. Phil always offers to put them on- and for a second I feel like Cinderella- if Cinderella had to get chemo- she would totally rock monkey socks.


We get to Tripler and work our way back to Medical specialties. It's ironically next to OB/Gyn . Or poetic, I'm not sure. I'd be lying if I said it didn't sting a bit passing excited pregnant couples on my way out of chemo or into chemo. But then I remember how fun pregnancy was(there's that cancer induced previous pain relativity scale at work) and the four not so little monkeys who keep me entertained and I am grateful for my blessings.  I also recognize a couple of the regulars in the bay from last time. A chatty couple who talks to the pregnant lady- probably another person who feels a little bit of the sting passing other pregnant couples on her way to the chemo bay. Her body is trying to fight off the lil monkey inside of her so she is on weekly immunoglobulin drips.

Phil and I get settled, I don't land one of the nice heated seats but I have a warm hat from my friend Jen to keep me cuddly.  I get out my ipod and special compass my friend Cara made me to keep me centered and guided and to know wherever I am there's always a mutant there with me in spirit. I'm not very entertaining in Chemo. Everyone keeps telling me to slow down and use my energy to fight cancer- so I do that in the Chemo Bay. Phil's gift to me is to sit there and every so often channel some positive energy my way and catch up on Sports Illustrated. My friend Linda sent me a library of meditation cds- I threw them on my ipod and I do healing visualization. Deep breath in, blow the glitter out.

Then things got hopping in the chemo bay. We were waiting on my bloodwork to come back to determine if I could get chemo(it did, eventually, I could..) . A lady bopped in for her final chemo. With her 2 girlfriends. After a round of applause, another lady walked in, carefully guided by her husband who looked like he could use some holding up himself. She was obviously not doing well. This instigated overly excited final chemo lady to launch into a diatribe about how her husband had to go- that chemo was much more fun with girlfriends. Apparently we are on different chemo plans- mine is about killing cancer and if there is fun along the way- yippee- telling a lady who is about to puke for the probably 8th time that morning to sideline the husband- not my favorite plan. I think a heavy dose of zofran and a chaser of phenergan might be that poor woman's idea of a good time. Sick lady decides to jump across the bay- further from party central the first chance she got. I know they would have put her in the quiet area in back if they could- but that was taken up by a neutropenic lady(low blood counts- very susceptible to infection).  Like I said busy day in the bay.

I turned my volume way up, again and Phil took a coffee break. He would have brought it back but is a frequent flyer in chemo world and considerate and worried the smell might bother someone. It could have but the smell would have had to get past the stank peppy and her entourage were making with loud final chemo gift giving and video of every step and drop and then launched into a very long story about someone at work who didn't get it and was incompetent. Not only do we live on an island, we are getting treatment at a military facility on an island. I look at Phil and he shrugs- mind you I am hearing all this over my Healing waterfall guided healing imagery- or trying to. He knows everyone they are talking about. It's a small world, you always have to mind your words. A good lesson in the chemo bay and in life. Especially when sick lady is very very sick and the husband is there by her side holding the basin and rubbing her back.  Then at least there was quiet.

Don't get me wrong- I'm all for fun and games.  Chemo is a long and tough process and no one's ever in the same place. You do what you gotta do- as long as you understand the person next to you might be very sick and may never get a chance at "last chemo day" and when they do that day is going to look a lot different.

Shortly after that we got what I hear is a pretty rare treat-snacks- some great folks from UH brought in spinach wraps and desserts. Food in the chemo bay can be distastrous- but from what I understand most centers have snacks and such available, not so at TAMC. So next time you are frustrated over where your tax dollars go- you can be sure that although I'm pretty good at pushing for the good expensive meds- there aren't a lot of frills to go with it at an army medical center. A trade off in my opinion that is well worth it- not too much of a frilly girl anyway.


 Rounding out the Round 2 of Chemo was the addition of a newbie- brought in for blood work. That person was me just a few weeks ago. I still don't know my way around and I'd like to keep it that way- but her tell tale terrified deer in headlights eyes made me want to drag my IV pole over there and wrap her in a great big hug. The nurses there are great and sit down and go over a lot. Yet had I not already had extensive knowledge of cancer and chemo- I would feel pretty alone in that crowded room of varying stages of chemo-ick listening to the side effect trail and glancing around to see the reality. I wanted to introduce myself and give her my number. But she was still in the throes of chemo 101 when I got unplugged and my bone juice shot(which means no trip in next week unless I'm sick!!). But it looks like she will be taking peppy's place in monday chemo bay fray- maybe next time I'll try to remember to take an extra pair of socks. Sometimes just a little thoughtfulness and a small thing can keep you warm in a lot of ways. Many hugs to those who send special gifts whether they be mailed or sent on prayer wings. I appreciate them all.

test blog

As we get ready for chemotherapy, I've configured Jen's Phone to post blogs. Lily and Jen will be going to the hospital tonight so that lily can stock up on fluids through an IV. Here is a picture of Lily and Bella.