Sunday, February 26, 2017

Minding my Business

I've had a few surgeries and it's nice that the mind kinda gives you a bit of amnesia about the events and the recovery. Then you do it again and you are reminded- Oh YEAH I forgot about THAT fun stuff. The mind is a beautiful thing.

I've had 5 abdominal surgeries, a mastectomy(plus rescraping), an arm chunkectomy(x2)That is the official term and of course a bunch of little weirdiesms removed. In our mutant group- that's virtually nothing surgically and we stick to the motto- when in doubt- cut it out. Everyone feels different about their scars, and rightly so- each personal journey is different and so many of the scars are hidden or just plain invisible. Thats the tough thing about pain- you can't see it. You see the fall out- the infection, the scar- but many times the effects are cumulative.

Lily would complain about the littlest of owies- and I'd say- after all you've been through? THIS THIS is what is gonna do you in? Yet the amazing body is in tune and sensitive and after years of assaults sometimes just hurts. I've been on chemo for what- 3 years now and it is- cumulative. The body gets tired a little quicker. You find work arounds and absolutely savor the good days.

I remember the post surgery weepies. They sneak up on me- they always happen after I get home and am feeling better but not quite where I want to be or everything is going so much better than I thought they would be and bam- it hit me. The other night it hit.

I am over the moon about the pathology- we celebrated with a family recipe of margaritas- as I am on a high sodium diet- salt rimmed beverages and tacos seemed to be the best choice. Doctor's orders. Phil made sure his girls had lemony limey non alcoholic versions.

For years my aunt has been promising that I would be our family's miracle. Yes we are overdue. Lily is my miracle. With Grandma(a devout Catholic and Democrat)- our most ardent prayer warrior now wrangling the shenanigans from above there has been many speculations on how busy everyone is keeping her and well this Trump business- how could it happen. And then I come out of brain surgery- with minimal pain, minor side effects, and an outstanding pathology. I have some pretty amazing angel power. It happens.

I believe in miracles. Every day can be a miracle. Yet to be called a miracle, survivor's guilt sets in and I'm just 2 weeks out of surgery. There are many roads and hurdles to face still. I know too many mamas praying for miracles, who have prayed for miracles, who are creating miracles. Too many friends. Too many. All I know is I know I have much to do and many more to help. And when the overwelming sad or worry sets in- that's when I jump in to what I do. Yet even 20 min online will tucker me out- brief walks-sitting in the fresh air. The other night - feeling sad(just because- it happens post surgery- it's an official thing like SAD, Baby blues) and can readily be explained by exhaustion and chemical imbalances due to meds and stress.  It was an ugly cry- I feel lucky and happy and it is unexpected and I know it's not wrong but I just didn't know what or how to feel. Ugly crying helps by the way- does make the nugget throb a little so definitely gots to limit that.

So it's time. I started checking in with friends, making calls, enjoying short visits. Taking it slow but unwrapping the coccoon. Minding my business and backing off when the knees get shakey. That's my tell. My knees wobble just slightly. It's time to rest. Can you believe it? 14 days post surgery and my knees wobble when I get tired? I'm still taking it slow. The brain the beautiful wonderful thing it is- needs rest and despite this wonderful outcome- there are still risks of swelling(not necessarily in my control) and another surgery is really not something I need to test out. Thank you for all who are patient and respecting my quiet. Thank you to those who gently reached out.

With surgery- there is always the- how are things moving? You KNOW- the bathroom questions. Especially with abdominal surgeries- everyone needs to make sure everything is moving. After 4 c-sections and an open hysterectomy- moving after those surgeries is a rare treat. Physically, bowelly- even laughing can be an interesting business. So you are super hydrated and they load you up with laxatives and you navigate back and forth to the bathroom cataloguing and moving all business so you can take your business home. After this surgery- The first time I moved from bed and did not have entire torso flame pain- I got this. Most people want their foley cath out as soon as humanly possible- me I'm a weirdo- don't like the thing but dont like getting up to go to the bathroom every 3 seconds- and it's a means to a sleepy end for a night or so. I know waaaay TMI.

In the ICU and PCU- the nurses called them Squirrel toilets. I called them space age toilets- regardless- ewwww.  They are a toilet in the room covered by a sink that swings over it.  So no privacy- not that privacy is ever an expectation in a hospital, buuuut still. I get stage fright. If going home relied on things moving- we were going to be at a literal stand still. I was lucky enough to not be sharing a room, but in my mind, the room is essentially one big bathroom- sliding sink cover or not.
Pull red lever to see the magic happen. hee heee hee.

One lucky morning, after doc rounds, Phil went to grab a coffee and there was relative quiet. I chugged a little miralax and did my duty(ha ha I said doody) to try and check off another box to get us home. And you bet your bottom the nurse walks in right then- and me in my most adult voice possible- somehow feeling like a 2 year old navigating potty training- call out- Things are moving and I am NOT showing you but just thought you should know. Which apparently isn't how most people handle the situation and he found it very entertaining. Business Minded. That's me. 

Thursday, February 23, 2017

Unexpected but WONDERFUL. No Malignancy.

I don't do surprises. Not a fan. You get pounced with cancer diagnosis after diagnosis and after awhile- surprise!! can be kinda scary. Not fun.

I never told the story behind the term- Rocket Surgery. I've mentioned I mix up idioms all the time- never shoot a dead horse, it's not Rocket surgery- which actually was inherited from our friend Rob after many Coronas in a young younger life- when wow things were simple and we thought they were hard and after a long week you could sit around with friends and drinks and watch your 2 year old split her diaper open and laugh like there was no tomorrow. Then those friends would help coordinate a surprise anniversary getaway for you per the wonderful husband's request. A simple note- pack a nice outfit, comfy clothes and whatever you need for a night away created absolute panic in me- I immediately called Leesa- what do you know? are YOU watching the kids? where are we going? She repeatedly denied all knowledge.   A night later and almost nervous breakdown complete- I had been treated to a most romantic night at Williamsburg, complete with in room jacuzzi and candlelit dinner by a window where we watched black swans canoodle by a lake.

Leesa may have mentioned for the sanctity of our future marriage that surprises cease. And henceforth and suchforth we pretty much limit the scare factor.

Today was my post surgery follow up. I know I feel good. I am floored at the minimal pain, dizziness and side effects I expected. Yesterday we ventured to school to see Lily and her friend sing the National Anthem for an assembly. It was exhausting and absolutely worth it.

We didn't expect a pathology report. They usually get sent out and take time(I guess we are 12 days out of surgery- post op time warp....)- there is a preliminary report and sometime you are exciting enough that they discuss you at tumor boards. We learned to be patient for results. Was not expecting the nurse to bring in the report and definitely not expecting to hear NO MALIGNANCY!

Phil grabs the report. There are words spoken. The fuzz in my head is the exact same as when bad news is delivered. That might just be because I'm healing from brain surgery. I prepared for the worst. It's usually the worst- yes we hope for the best- but it's never actually PUT on the table. Mutants do rare. We come to expect it. I don't know how to react. It is my second excursion since surgery and honestly making it to the surgery clinic made the legs tired and a little jello-y. I should jump up and down- this seems like a jump up and down moment but part of me doesn't believe it. God love some good old Catholic Guilt. I stick out my hand- Phil grudgingly hands the report to me. I will pore over it later- but for now all I see is the only thing that matters...
No Malignancy.

My surgeon comes in to check out the incision and gently plucks away the stitches. We just smile and shake our heads. This is good. He recounts the surgery for us. There was a lot of swelling. Like a really good thing we postponed surgery so he had another expert pair of hands there. One set was needed to hold my cerebellum inside my head. It reminded me of hearing the surgeon talk about Bobby's surgery and how his brain just mushroomed out and here I was a minimal headache and no dizziness and tumor evicted. He had to open up extra bone. I am even more amazed I haven't been in more pain. There are platinum plates- they won't set off airport scanners. It's ok- I don't do airport scanners- TSA feel ups are so much more fun. We discuss how you just can't predict symptoms, you do your best and hope for the best outcome. Phil and I forget to ask all relevant post care questions- they seem to float away. Steroid dose, salt diet, blood just so floored by the results.  Minor considerations - little sharks to battle instead of the great white it could have been.

Radiation Necrosis. Scar Tissue.  Basically when we irradiated the Boobie toomah a couple of years ago(which we do not absolutely know was brain metastasis(cancer from my breast tumors) it could have been a new tumor- an angrier LFS mean nasty sort like my dad and brother had. It could have been dead tissue- the radiation did it's job but my body couldn't clean up the dead stuff(also an LFS problem). Or it could have been both- dead tissue AND the radiation caused a new angrier tumor(which happens a fair amount in LFS and was my big fear- these tumors do not respond well) . It could have also been breast cancer cells that decided to grow again and like that spot. There was a tumor. we zapped it. What was left got angry and caused swelling. It happens- to non mutants too. Again- you can't predict it and that is why we watched closely by MRI. Surgery was the right call. The swelling can cause big problems. This is why it is important to advocate. This is why it is important to have a good team and communicate each step. It's hard not to panic and to take the emotions out of it. This was hands down one of THE scariest things I have ever faced. One of the sweetest things a friend said to me was that she couldn't imagine facing this after facing all we had with Bob and Dad and knowing what I knew. I never forget all they went through and they have been especially close to my mind and heart over these decisions. It absolutely shapes my decisions. It is there with me, with my mom. with our family. That is Li-Fraumeni Syndrome. That is a testament to not only our family strength but all the other mutant families out there who have done this over and over and over.

This is not over. We will keep watching the area. There could be more swelling, more dead tissue and unfortunately there could be more tumors in the future.  I will go back to regular chemo, forever. Sooner than I'd like. BUT we battle this disease on the fronts we have and one very scary brain tumor front does not have to take priority now.

Now for you my friends and ardent supporters. Thank You. For the luck charms, the presents, the messages and hope and prayers. I feel them all and they keep us going and well if credit can be given for the outcome so far- those are the most logical reasons for it I can imagine. Thank you.

Tuesday, February 21, 2017

Rocket Surgery

Home. Oh wow. The breeze. just being able to be. Nothing like even a shortest of hospital stays to help you appreciate the creature comforts of home.

I have a dear friend whose son is one of the toughest fighters I've ever known. They have lived at the hospital for months and months and can no more than get home for a brief respite- to be back in the fray. I can't imagine. When Lily was sick- Phil did night duty because I just couldn't handle it. He was more assertive in creating a sleep environment. We had friends who could not leave. We would be discharged and come back to our friend Elika and her beautiful mom and sisters, engaging in some craft or school- because when you live in the hospital you try to live and if you are there- that is the safest place for you at the time.

I did just have brain surgery and I am very lucky. I do not take this for granted and think of my so many friends who are fighting and negotiating the tricky health waters right now. Waiting for scan results, biopsy results, wondering if that ache is the next cancer. Despite signs, offering board games- if you are "bored"- I have yet to feel that. Bored? What is this bored?

We will hear when we hear about what exactly the tumor is/was. Then there will be thoughtful processing and a plan. No matter what it is, the biggest hope is that my surgeon got all of it or as much as humanly possible as radiation didn't work the best there for me and chemos can be hit or miss. We wait and we see.  My surgeon was absolutely amazing. He had some pretty good references- I know many of you might not know I have a pretty impressive network of brother in laws- one of which knows a thing or two about brains. I remember when he said he was going into neurosurgery- a bit of a relief and a a great big hope I'd never have to pick his brain. Luck, karma, whatever, here we are. Brains picked.

I don't feel like I just had someone poking around in my head. Which is unsettling for how much I worried about the end all be all organ that makes me, me. It is literally a mind F$#@!. There is the worry you feel when your child is sick. When your entire being is laying there beside you you- your heart, soul, breathing, fighting, completely outside of you. The hours I laid next to Phillip and Lily, praying, pleading to be able to do something, anything to fix them, to help them, to make them better. Let it be me. You would do anything to trade places with them, to ease their pain. But whether it's being left out of a party, or coping with physical illness- so many times there is nothing we can do but just be there and the burdens we carry when we can't ease the pain never quite go away- even when the little shits prove everyone wrong and start tap dancing on your last nerve or do things that make you yell- knock that off I've worked too damn hard to keep you alive.

The mysterious brain. We sat in our preop appointment a couple days before surgery and the surgeon let us know if the tumor shrank at all he would consider calling off the surgery. I like to plan, I used to be a big planner- it's taken a lot of work to try to be more flexible. THIS was not even an option, but wasn't it me who kept saying if it's not good, let's not. SO after feeling completely validated and upended all at the same time- I went into the STealth MRI- still hoping for shrinkage(not something any of the male sorts will get) but knowing that an infiltrated contrast and many factors could topple the stack of cards of care and recovering I had come to terms with. Those extra 2 days- delay had gotten me to the point I was ready to get it over with- but stress has that effect- sometimes the fear can mess with the plan. I did feel like our surgeon really heard me- I had no symptoms going into it really and the risks are big. I want to do everything I can to be here, but me. Quirky off balance, me is ok( I can say that NOW).

We talked actual operation, he showed us the small titanium plates that would cover holes in bones. I asked specifics about positioning. One of those things you learn after surgeries- the muscle aches and pains from how you are positioned for the prolonged period during surgery often are worse than the actual incisions. With the tumor being in my cerebellum, not particularly close to the surface- would require neck tweaking- full body wrappign(YOU DO NOT WANT ANY MOVEMENT when someone has a sharp object up in your noggin. ) as well as a headcage which would leave a few drill holes. He promised to take care with the shaving of the hair. I could give 2 F$#@!s about the hair. If at that point he wanted to shave the whole thing and it could help the surgery and recovery in anyway- go for it! Scar- do what you gotta do- I'm earning this bad boy- I won't see it- do what you gotta do. It's pretty bad ass if I say so. Lily says it's 21 stitches. Bella was so worried someone might make fun of it. What kind of ass would make fun of pain- no one in our circle babe-she hugged me yesterday- I almost forgot you had surgery you look normal again. Oh my heart.

I didn't feel confident going into surgery, but I was at peace and confident in my surgeon, the team and that this needed to be done. The outcome could have gone so many ways. The mysterious wonderful brain. I have zero memory of being wheeled into the OR. Doc warned me I would only be allowed tylenol and a mild muscle relaxant after so they could monitor all function. That was one of the things that terrified me the most. The fear of the pain and dizziness and knowing not much would be done about it, even though I understood why. I promised him I was a talker on meds- and if he gave me good stuff I'd tell him whatever he wanted to know. I would be the world's worst POW.  Unfortunately my lungs also get a little sleepy with anesthesia- so the whole watching those oxygen levels becomes a big priority and well- less leeway with the other fun stuff. Apparently I was very very chatty. Who knows what secrets have been spilled. mwah ha ha.

And well coming out of anesthesia is always a trip. I have many many angels looking out for me and have been sedated a bunch. I always wake up feeling a profound loss that these drug induced alterconscious times weren't all hollywood realm gather with the angels as they walk you away from the light sort of events. And I do get post anesthesia weepies. It is a depressant. duh. I am confident I was not alone this time in any stretch. It was also fun to joke that my dad and Bob were standing there with us as I came out-Planned that one for weeks- hindsight- brain tumor patients should be careful about calling out fake hallucinations of the beyond- but then again everyone blames it on the anesthesia.
Boobie toomah/cyst before surgery.

The post surgery MRI was my least favorite event- but in grand scheme not a huge deal. I wasn't dizzy(pretty much didn't open my eyes to check- but the kind of dizzy I worried about was the earth shattering spinning kind that no amount of closed eyes help) My pain was a 5-6. I was expecting 9 and puking(no puking!). I realize people have very different pain scales and tolerances(I'll be the first to tell you I'm a total wimp when it comes to pain) but the pain scale is pretty clear and emoticon wise- I really figured when they open up your head in any way- you would be totally grimace face tears, can't concentrate puking face. I was not.
Post surgery- bye bye boobie toomah.

Due to years of chemo- my veins are sad. There was lots of discussion preop about central lines and options to keep me safe and accessed. We had my port accessed, but even then- certain veins and catheters are better for different uses. I ended up with a femoral catheter(right in the groin- left side not right- TMI?) since my arms and chest are a bit messy. They flush ports with saline and heparin- so they don't clot- some people taste it(it's a weird metal salty tingly effervescent ick in the back of your throat- people get really put out about it. Lily would dread it. I taste it- but it's fleeting and no sense in ruining the taste of a good piece of candy trying to hide the taste- so I just let it pass. It's one thing when they flush a port in your chest which is close to your throat and you taste it- it's a bit unsettling when they flush a cath in your groin and you taste it.  bizarroland experience.

So they wheel me to MRI. I am claustrophobic- It is an LFS stress acquired condition - the constant cumulative threat of cancers and what these amazing loud tubes of magnets will uncover inside - lends to thoughtful head clunking- what ifs. Post surgery- well we are just hope hope hoping for good margins, no swelling or bleeds. I was loopy but very anxious. I still had all the heart monitor electrodes attached and my nurse asked if I wanted to peel them off or should he. OH I can do it- not wanting to be a bother- I have ECHOS all the time- sometimes I forget about one or 2 and you find it later with it's bonus adhesive hiding under uniboob. As cute as young male army nurse is, I have enough wits about me to know I don't want him flopping uniboob around in the middle of MRI land. So I start flicking off electrodes and at some point grabbed and deaccessed my port- the port that was our important back up and specially marked with how much contrast and how fast to push it for the MRI.....Yep that happened. And there are only a select few who can reaccess a port and in the middle of the night in MRI- they aren't hovering. Jen bought herself another vein dig. sweet. could be worse. We could have to shove a newly operated on nugget into a headcage then slide into a loud clanging tube. Oh check. That's why we are here. commence anxiety and difficulty breathing- oh wait I have oxygen on- I am breathing. cool. air. so dry. hummmmm. hummmmm. bang bang. schwiiiiiing.  After all the talk and prep about non stress and calm- spa tripler delivers again. But I'll take it over pain dizzy and puking- perspective.

That being said- The ICU at Tripler- one of the few departments we had not visited- was really nice. Nice to the point when asked if I knew where I was I hesitated- used to the standard rooms that haven't been updated since 1958- this didn't LOOK like Tripler at all. Then there is is the really mean question- what day is it? People. Do not sedate someone and expect them to remain in the right time space continuum but also- unless I have a child present to tell me which after school activity we are late for- odds are I don't know what day it is. Next question. Month- got that- February. How about who is the President- well now that is just plain old mean and cruel.

I had really really wonderful care. The perfect balance of telling me what was needed versus what I needed(sleep anyone?) stop the incessant beeping.  I know many are often concerned about the care at a military treatment facility and again I must say our experience is very very good. There are the standard glitches and problems- life, shit happens( another blog- space age toilet and whatnot)  but we have been lucky enough to encounter some of THE finest, most compassionate, dedicated health care professionals at TAMC. We do tend to latch on a bit. ICU had a view tourists would pay to have brain surgery for. I spent 2 nights in ICU-more so because it was relatively comfy-(right?!?- who knew) than a huge problem that needed to be addressed-except that little bit about just having brain surgery and needing monitoring thing. BUT as in all good things in life and brain surgery- that too must end.  We ventured down to the new PCU - Progressive Care Unit. Because you have to step down to get -HOME. A step down from ICU and view - but a step up in independence - rooms newly renovated and very good care. It wasn't until later that the familiarity of the room itself hit me. Where I was used to be the Pediatric Sedation Center and PICU- a place we spent some quality time with Phillip, Lily and the annual kid MRI screens. The kids came to visit- even Kiera who often would rather scrub her hands off than spend time in the hospital.
a sweet valentine!

My surgeon checked in bright and early and I aimed to be a great patient. I am not stronger, tougher or any better at this than anyone. Luck. My scar was healing well- pain was being managed and I was absolutely floored that I didn't feel dizzy, nauseous or that any sort pain that I had been expecting. I don't defy expectations- the situation did. Luck. Expert care. Tons and tons of good vibes, prayers and love. I did mention that I've had worse colds and headaches from just dealing with kids- I do not in any way want to minimalize what happens or brain surgery.  If one's stress level before procedure is proportional to the positivity of outcome- I could explain it away and say I rocked it- but I can not take credit. I do not want to diminish the network of care and professionals who came together to ensure this outcome. They don't do it just for me, they do it every day. I am grateful.

I struggle with "making it look easy". None of it is or has been. Sometimes seeing others smiling through treatment can be downright demoralizing while you are in the thick of it. I see pictures of kids in treatment online- "reminders" it is not sunshiney, fun or easy because when you are in the dumps it is tough to crawl out. It's a tough balance- the realism, the difficulty, and taking the breaks when you get them. I know how difficult a surgery like what I had has been on many friends and has left long term, hard side effects. I don't want to in any way take from the hard work and pain they've endured through recovery.

So I rest still and stay unplugged-ish. I appreciate the time with my family. I itch the bits that are healing gently- the kids are helping plan a hair trim to even out the shaved area- Phil is knocking out projects all over the place. Grandma and Monica are spoiling the kids with treats and projects and we've started short visits with friends and appreciate the sweet treats and love we are getting.

I stick to tylenol during the day and my back is a more reliable weather indicator than Guy Hagi(local weatherman). At night I take a little more for pain and seem to have a bit of a middle of the night medication supported Amazon shopping problem. If I disappear online- Phil may have enabled parental  restrictions on me to protect any sort of future retirement financial goal- but today I got the most lovely solar butterfly/dragonfly lights package! And I've been making some good headway on the girls' birthday presents...Now to walk to the corner!

Thursday, February 16, 2017

Hello from the Other side....HOME!

After watching the awards show and emotional performance by Adele in the hospital- this has been my ear worm since getting home.

I have so many words and so many thoughts(yay!) and those are as dizzying as it gets(yay) but this will be brief .

I keep saying it but I am just lucky. LUCKY. The fear and outright terror going in- like anything is a huge mental battle with the unknowns. Learning to accept you just sometimes have to roll with it is so helpful.

I am lucky to be surrounded by amazing people. MY husband is the most phenomenal man I have ever met and I know this has been an excruciating time for him- yet the average person would never know to look at him- they would see this outstanding hard working leader, excellent father and the absolute best friend and husband for me. And that is what makes us-us- you just do- the greatest award, accolade, reward was to sit on the couch watching tv, together for our 18th Anniversary just a few days after brain surgery.

My mom who packs up and comes to make sure we know how much we are loved and cared for. A best friend who does the same. I know they all have made huge sacrifices to be here for me. I am so so so lucky to have you.

I have exceptional care. However it came about- the bumps along the way- the outcome is what we hoped for but didn't plan on. I am so so so lucky.

I have caring, giving friends who are patiently waiting just to help(Thank you thank you thank you) or who just spot a need or a want and fill in. SO grateful. Kiera's best friend taking  time off from school with her to play during surgery day to help keep her sane. Oh my heart. SO lucky, to Phillip's girlfriend and entire family providing him distraction since he is stoic like his dad and would never let on how terrified he was. To Phil's bros who sat with him during surgery - you have a special place in my heart and I have a debt I could never fully repay. For lip balms and magazines, thank you so much Barb. Just anything to ease the terror, I don't know what I'd do without you.  We all were terrified. How could you not be?

The surgery went well. I can't believe it'll be a week tomorrow. I feel really good. SO much better than I ever imagined. I am so grateful to my special brain tumor buddies who really tried to tell me it wasn't going to be as bad as I feared and those who gave me the real scary details- because I like to be prepared. These are the things that kept me sane in the unknown. I am so grateful for you. I am so lucky to have you in my life.

My surgeon is a legend as far as I am concerned and I am aware the outcome could have gone many ways out of any of our control. I made sure he knew to thank his wife for me profusely- The hours and worries.

The tumor bits have been sent off to be analyzed and it will be a week or few before we know what we are dealing with, which could change some treatment plans but- as always we deal when we know and we hope the luck holds out. Sometimes you get thrown and i'm not saying it doesn't take work, but having faith and believing things do happen for a reason sometimes are integral to getting through. And we got through so far with a whole lot of luck.

I get really tired really easily. I save my energy all day for the few hours after school to chat with the kids who are - oh I can't even express how much I worry and am impressed by the grace and maturity each one of them is showing. I hate that they have to worry- it kills me but i remember being a scared kid with a sick brother and dad and well- we get through. We are so so so lucky.

I try to take just tylenol during the day and save the good stuff for night. As long as i take it easy, it works.  pHysically- other surgeries were so much more painful- which my brain tumor friends told me- but you know I'm stubborn and plan for the worst. The first 24 were not fun, but again not the dizzy and pukefest I was expecting- and not even as painful as I was expecting-so so grateful.

The brain just takes time to heal. I feel weak, but not off balance.  I am not dizzy and Bella performs daily neurological exams- and I have finally convinced her multi digit multiplication is not a fair one. I am being cautious to just rest when I can. I am bad about turning away visitors, which is why I say lets hold off for a week or two- as to not stress Phil out when I overdo it. But I really really appreciate texts and messages and I am keeping my phone off and limiting screen time- just to keep the healing on the right path and lord knows the kids are plenty of stimulation each afternoon. Please dont be afraid to reach out- I'll answer when I can. I feel so lucky just to sit with the kids and chat- but even then it is exhausting. Which is funny- not in a marathon way but just tired. I sneak off to my chair on the lanai or recliner upstairs(stairs require a 20 min nap- so silly some of  this recovery stuff but I'm listening to the advice i've been given and embracing nap times!).

Nutshell: I am home- we are waiting on what name we can officially call Boobie- but she is out. I feel so much better than I thought I would- I am so grateful for the love, prayers, juju- thoughts- everything sent our way. You know I was fairly medicated when I guess I asked Phil to take pictures post surgery. You will NOT be seeing those. And the space age toilet will be a blog on it's own. But if you don't like scars- look away- this is my new fave- Boobie's exit route. Short- ha- you know things are ok when jen doesn't just write a paragraph! Hello from the other side.  So glad and lucky to be here.

Monday, February 6, 2017

Being Flexible-Eviction Moved to February 10.

I am not flexible about a lot of things. 40 pounds of steroid weight gain does not help. When your neurosurgeon's secretary calls and asks if you can move surgery until 2 days later- despite the overwhelming urge to scream Um F#@! no, you try to be rational and realize there might be a good reason for the asking.

And of course this will happen as you are standing in the middle of Ross looking for butterflies for your zen garden. So you say yes, I have reinforcements arriving tomorrow, can I ask the reason? Not that the reason really matters- obviously there is a good reason- or someone has a greater need or something. The fact is- I want the right people there knifing into my nugget and if Wednesday is not going to be that day- well it is not.

Yet- I also know that if the date shifts- most of the other appointments shift. My reinforcements know the drill too- all too well. Flashback to multiple visits to the SAC(Surgery Admission Center) in one week because we had to take wider margins on my mastectomy. I feel like this is what I get for planning, but then again- I had removed every box and bin from inside my closet and they were now lining every wall of my room- 2 extra days may not be bad AND I have reinforcements to help.

So eviction is now on Friday February 10. I managed to keep my other preop and SAC appointments but we did have to switch the Special STEALTHY MRI until Thursday- because they want the most recent pictures before the surgery. Makes sense- not gonna fuss with that. I also have to shift around a quick visit into hem/onc to get my port accessed for both MRI and surgery since my vein- yeah apparently there is 1 decent one left-isnt so cooperative and I dont want to risk it being blown.  As I sat on the lanai of the most amazing room on the island of Lanai- I rescheduled the MRI and then tried to put it out of my mind(hee hee hee) for another day and just relax with Phil.

Lanai the island was amazing. We celebrated our soon to be 18th wedding anniversary and just took some time to be together. Lanai- population 3000, island of no traffic lights was just what we needed. We rented a jeep- drove out to see parts of the island- like a shipwreck off one coast, watched some whales swim by and then spent the afternoon in the pool.

And the next day- we went to see Sweetheart Rock and I took a nap, Phil went for a hike and later he was very pleased that they allowed him to have snacks in the pool. The milkshake shots delivered every so often were also very nice. We talked. It's been awhile since we've had the time or energy. (I have to admit most of my energy this getaway maaay have been fueled by the Nespresso machine in the room- man I love those things- it totally reminds me of Europe, sigh, happy sigh) Although 2.5 days could not completely recharge us- it was direly direly needed. I suppose this is why people are so fanatical about these things called "weekends" and actually having them off. And these are people who don't have impending brain surgery.

I am ready to have this over and done with and get on with recovery. There are still the unknowns and wait and see how I will feel- just 2 days later. The anxiety is a real beast and I'm trying pretty unsuccessfully to not be a complete hulk. Thank you for hanging with us- going with the inevitably changing flow and keeping faith that everything happens for a reason and even though we may not know it- it will work out.

Wednesday, February 1, 2017

Stocking the Pantry

The days speed by. Nightly, I have discussions with Lily and Bella- will it hurt, will you be asleep, what if you wake up during the surgery? Are you scared?

Of course I am. I am scared of a lot of things. I am scared of pain, of not being myself, of the nausea of losing independence. A Mutant friend sent a very kind gift,with it another special gift from her son, who has had brain surgery and a card that his brother signed- Good Luck with the puking. And I laughed- because it's perfect. And they got through and we will get through. 

I am scared of troubling anyone and causing stress or pain.  I don't ask for much help, but I am getting better and I truly appreciate the kind gifts and cards from friends all over that show me how much you care and that you are thinking of us. I appreciate the rides for the kiddos to and from activities. My cousin's wife sent a Doterra Oil care package with a diffuser and oils to help with stress and healing. Its something I've been interested in, but put on the backburner for more pressing research. I truly appreciate that she took the time to do that for me and Serenity helps nightly.  We diffused Peace the other afternoon- Bella stank up the joint with her feet- oh preteens feet- and Kiera declared Peace smelled like rich babies. I can't say I had the same response but reminded me of how powerful smells can be. 

My friend Gina launched the Team Mallory Tshirt fund again and again I'm floored and humbled to see the support from all over. I can't wait to see pics of everyone in their shirts- I made a team Mallory book years ago and I am looking forward to updating it!

Shutterfly photo books offer a wide range of artful designs and embellishments to choose from.

Our Raptor friends started a meal train for February and March, which is always appreciated and I've had many ask about being added. We have help from my mom and one of my best friends through March. Phil is taking leave most of February- so hopefully we will be able to get into a routine and I can take advantage of their cooking skills and they get a break a couple nights a week. I am more concerned about when Phil goes back to work and those times can get overwhelming if I am not feeling 100% or even my more usual 80 some percent these days.

That being said- we welcome home cooked meals and are so grateful for the love and time put into showing our family love during this recovery. I was tasked with completing a list of our favorites- restaurants, take out, etc and it's harder than I thought to put out there. I know that cooking meals and bringing them all the way out to Ewa Beach isn't convenient and we have so many friends all over who would like to help. A couple good friends keep prodding me and urging me to get on with it and share our likes, so here goes.

Groceries- Safeway, Costco, Commissary
I'd have to say one of the most helpful things over the past years was when friends helped with groceries. A friend used to call on her way to the commissary and ask if we could use bread, milk, whatever- she would stop in for a visit with bags of treats and groceries and I truly appreciated it.

My Sister in Law has been phenomenal over the past few years at helping with this. She is pretty amazing- will load up  her 4 kids and maybe one of mine and do 2 families worth of grocery shopping at the commissary- if she takes Lily- it's like 3 families worth of groceries. . She knows our likes and dislikes and she's agreed to be the point of contact if anyone loves grocery shopping and would like to help after Phil goes back to work.

The other good news is that the boy got his first job at Safeway- convenient for all our shopping needs- if not a bit pricey. We do a fair amount of convenience shopping at Safeway and Costco for groceries and quick dinners.

Nearby Restaurants-Basics- McD's, Taco Bell, Dominos, Wendy's.  Panda Express, CPK,  Five Guys, Popeyes

The Laulani Shopping center close to our house has a Buffalo Wild Wings, Starbucks, Teddy's Bigger Burgers, Ross and Walgreen's where we end up grabbing necessities alot!

There is a new mall- yes we've been here 11 years and just got a mall one town over. Ka Makana Alii- complete with Macy's and food options- we pass there most nights taking girls to dance class.

The Mallorys do love to eat out, although amazingly we have not lately. There really aren't a lot of delivery options for Ewa Beach. We've even taken to doing homemade Pizza for Friday pizza night. Our big Sis Kellie sent us a California Pizza Kitchen gift card and it was strictly for a Jen and Phil lunch date and was very much needed and we finally got to visit the new CPK at the new mall.

 I've been enjoying cooking and cooking with Bella - maybe because I can, Maybe because when the world seems like it's throwing crazy stuff at you- putting ingredients together purposefully to create a meal feels like a way to accomplish something- and fulfill a basic need and that of the kids.  Kiera and Phillip have learned we make way better coffee than Starbucks, but they still enjoy a treat every so often.

I also have an Amazon problem and the girls are learning to shop around and show me what they would like or need conveniently delivered in 3-7 days with prime. Oh my little apples.

I think this might be the most bizarre post. It's like airing of the Mallory gastronomical laundry. We like dessert. We are meat and potatoes people. Love chicken and salads.  Miss good Mexican food. Live on an island but not crazy about fish. No food allergies. Love coffee and teas. and chocolate. We stock the pantry but like everything on the island-space is limited with exception it seems to be in the children's bellies!

But seriously- I appreciate any positive thoughts, juju, energy sent our way and know it makes a huge difference. I worry about the kids and Phil- Phil because he will take it all on and get it all done and the kids because well it's just shitty- they should just have to worry about kids stuff. I'm so grateful for my mom and Monica taking months to be here for the fun. I am grateful for the so many who are patiently waiting with us to see how it goes and if they will be needed. I appreciate everything that makes life a little easier. As for the kids and Phil- anything to make life easier on them and spoil them- is a HUGE gift for me. Thank you again and again for being part of the Team. XOXOXO

Lily Kay Monkey

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