Start Monday With a Positive Thought... and Being POSITIVE That You hate Mondays does not count :)

Yesterday started off nice enough. Each of the big girls had sleepovers with friends Saturday night, and then met up with me and Emi at church Sunday morning. That means by process of elimination I only had to get one child ready. Still didn't manage to get shoes on that kid. I think I thought I had them in my purse or the car, but no.

All the girls and I plus Nat's BFF made the trek over the hill late morning to go see Dad. He seemed well enough, and happy to see us. The kids bring a bit of light and laughter out of him that I like. Emi likes to share his snacks with him, and she knows where ALL of the wall mounted hand sanitizers are in the facility. It was a little rough though, having 4 kids to see dad, and I could tell he wasn't feeling all that peppy. We stay about an hour and then leave him be.

Back at home I try to convince Emi that it is time to take a nap and that she is tired, all the while trying to convince Lulu and Nat that Emi needed to sleep so they needed to be quiet inside or play outside. Really I just wanted to nap. Just short of threatening them to not wake me up except for an emergency... lo and behold there were FOUR such 'emergencies' in the span of 20 minutes. One about a sprinkler, one about Lulu not sharing, one about a missing pair of pants... and then I just quit caring... because Emi was up since she heard the girls talking and giggling without her.

I suppose I wasn't meant to take a nap. But I was still bitter about it, until I got a call from Dad. (that I would have otherwise missed had I been napping...) He said he didn't feel quite right, and was worried about his leg and the source of prior infection. His nurse said it didn't look good and didn't think he should wait until his Wednesday appt. I encouraged him to tell her that he either needed the doc on call for this SNF to see him today, or I would be coming back over and taking him to the ER. He said ok. He would relay the message. Meanwhile I got a quick 2 sentence email sent off to his surgeon. 5 minutes later his surgeon calls me! I swear this guy is the best. (and married... darn it.) He said that we should not wait, he will arrange for an ambulance to take dad back to the ER. He would orders labs, a CT of the leg, and place orders to admit him for treatment. I heart him.

Bless my in-laws who love my kids, and trust my judgement when I say I need to be with dad. Dropped the girls off with them with an overnight bag, and made my 2nd trip over to Stanford (really cause going once a day just doesn't cut it for me.) Here is where my head started to hurt again. And I was tired. And potentially a bit moody. Which I apologized to God for, but it didn't keep me from feeling any less moody.

The ER is chaotic. Even just the parking lot. They block ALL of the parking spots with cones, and you have to speak with a cop to tell him why you're there and beg him to let you park there. He asked if I would mind parking in the lower lot? Sure. Why not. It's free. And my hips could use the walk. They could also use a nap, but apparently that's not his concern, so I didn't mention it.

Upon entry into the hospital anyone going into the ER triage waiting area needs to be screened like going through airport security. I know the drill. The guards are usually rude. I take off my comfy sweatshirt and put it in the bin with my cell phone and my keys. Put my purse in the next one and say "Ready?" for him to have me walk through the metal detector. He waves me through. Then he picks up my sweatshirt and says, "Whose the Marine?" I tell him my husband. His eyes light up a little bit, and he tell me what unit he served with in the Corps. But then he lingers with that look and on his last word, like he wants to know where my husband is. Fair enough. But that dang moodiness and numbness crept back in when I wasn't looking. All I could say was "My husband's dead." And now I feel like an ass.

Dad's CT was positive for a large abscess in the lower thigh. It is still contained just to the thigh and has not spread to surrounding structures or his blood stream. All of his labs are still good. Kidneys good. No confusion. Just a bum leg. The MDs and RNs at Stanford are amazing. They are busy, and competent, and compassionate. I heart them too. And the volunteer lady who kept coming by and asking if I'd like a glass of water while I waited with dad. Each time I said no. On the fourth round she smiled again because she was going to ask the same thing, and I was still going to say no thanks. She did, and I declined, and then she asked if I could use tequila instead? Oh hell ya. Her reply? "Yup. Me too."

There's no way she could have known about the last time Dad was admitting (under much worse circumstances) to Stanford ER. But I am sensing a recurring theme. The last time two friends came and asked what they could bring me. I said a sweatshirt and a cheese burger. They obliged and then also handed me a flask of tequila. (Which I was TOTALLY going to ask for...kind of as a joke... but then thought better of it.) They must have known anyhow :)

James' mom brought the girls by this morning to say hi before I left for work. It was a nice idea and I loved getting morning hugs and snuggles from my babies. But waking up confirmed to me that this headache was worse and I was nauseous too. Well now there's no way I could be pregnant. I mean, really. I could be the next virgin Mary... but I'm neither a virgin, nor named Mary. So unless God is really changing things up a bit... well. ya. I'm just sick. That's all there is to it. I did get up and try to face the day and power through. Dressed for success and all the crap too. I got as far as SV while on my way into work and realized this was not going to work. Back up the mountain I go.

Jammies back on, hair back up, checked work emails, installed Norton on my home PC, did a load of laundry and took a 4 hour nap. Back up to check work emails again, and then back to bed.

I re-showered and dressed this evening so I could try and make it to singing tonight for worship team practice. That was fun. We are a funny, motley crew. There is one song that is extra fun to sing, and (who knew?) had little clapping parts I was supposed be partaking in. I tried. Really I did. They snuck up on me. Then I'd try to out-wit them and sneak up on THEM, but really I was just too early, and through off the tempo in my little headached head. The one time I DID manage to get it, it was such an awkward over zealous attempt like I was going to pounce and not let it get away. And then I was proud, and then I lost my place.

This song also has a place to dance and let loose. Good ol B made sure I knew that I was expected to dance too. Confessing: I don't know how to dance, people. And when I try to think about HOW I might dance, the first several thoughts are of my 'trying to keep her off the pole' child who seems to be channeling her inner-stripper every chance she gets. Trust me. Even I know that's not appropriate for church. I'll figure something out. But it wasn't happening tonight.

Here's hoping to a good night's sleep. :) Nighty night.

I feel distinctively like I'm caught in a train that is crashing and I can't escape.

I think in short thoughts. To the point. Think it's the only kind of thoughts my head can contain right now. As everything spins around out of control, I will think short little thoughts to maintain a sense of peace. The only thing I can control.

I am rapidly approaching the 6 month mark of James' death and my brakes are on. All the way. To the floor. 150 days in. 13 to go. I like numbers. The are whole. Not broken. They are fact. They do not deceive. They are straight forward, without ulterior motives. They don't have stupid feelings. Like me. And those who I continue to alienate. I promise I don't mean to.

Having a hard time blogging anything these days. For fear of the backlash. For fear of acknowledgement. For fear of anyone validating or questioning my feelings in public. It's all the same pain. I can't tell the difference.

I have a hard time looking at my blog, and looking at my ABOUT ME bio. I suppose that's who I used to be. I'm not that person anymore. And I don't know what to put. Maybe I just need to take it down all together. Then I'm not so clearly a hypocrite.

My heart is raw, and my soul hasn't a clue what its supposed to do. It keeps searching and crawling.... Trying to find something blindly by its side... anything...

And one last thought, shared with me by a friend:

...

Sometimes... the best way to figure out who you are is to get to that place where you don't have to be anything else...

Sleepless Nights

Dad is continuing to improve at the new skilled nursing facility. Breathing a sigh of relief. For the time being. Which is odd, because I've become so accustomed to living in survival mode.

Dad asked that I stop at a store and grab him a few things: a pair of sweat pants, shorts, and a few t-shirts. Seems do-able, right? Wrong! I can get through the hard things, and stop dead in my tracks for the small things.

I find him the pants and the shorts and then start looking for a shirt. The shirt my eyes fall upon is a blue striped shirt. It's the same blue striped shirt that James was wearing the last time I saw him before he died. And I can't move. I have a handful of clothes, in a BIG store, one kid wandering one way, and a toddler unfolding ALL of the shirts on the next shelf, and then there's me. Hello blue striped shirt. What do you want from me?

I have a lot of anxiety now surrounding this blog now too. This was to be my sanctuary of a sounding board where I could put out what was on my heart, and kind of feel my way through the different emotions that swarm through this body. It's been suggested that I make this a private blog. Well, let me tell you something: it's not the strangers whose words I fear.

This blog sums up my thoughts and feelings, rational or not, and only a portion thereof. These are only a fraction of my demons and angels. This is no way constitutes a whole picture of my life.

There are some people who are tired of hearing about James. Sorry. For you. Not sorry for me. I'm still going to blog about him. I started this blog a few years ago after my mom died, and after Emi was born. It's seen me through this journey, which has veered mostly off the well beaten track of life that revolves around the kids, and is now painted in a completely different hue now that James is gone.

Maybe you didn't know him. Maybe you didn't like him. Maybe you thought he fell short of several goals. Maybe you thought that addiction, pain, depression, and PTSD were only for the weak. Well, maybe you were wrong.

The man I first dated on July 31st 1997, later married on July 31st 1999, and had 3 beautiful girls with, was my soul mate. We've been through more together in our years than most people approaching an 80th birthday. A lot of it was hard. Life is not easy. Everyone has a cross to bear. It's a matter of whether they chose to share it with the outside world or not. Sometimes that choice is made for them, even when they try their hardest to hide it.

Despite the overwhelming odds against James and me... there was not ONE time that I ever questioned his love for me. NEVER. We vowed to always speak from our love and never our anger. Love was our common denominator from the word go. There isn't a moment I regret. Or something I wish I'd said... Isn't that the ultimate goal? I'm proud of that. And in the same ending breath I'm still absolutely broken. Heart broken, spirit broken, anything broken... EVERY thing broken.

I'm not MAD at him for dying. Some think I'm going to get to a place where I'm angry about all that's transpired. Aren't you ANGRY with him for LEAVING you and your 3 girls to fend for yourselves? Well if you're not now, you will be. Maybe I will. I don't know. I'm not there yet, and just don't see it on the horizon I guess. What I see was a man who was haunted. Who started off rough, but pulled things together. He loved his family fearlessly. Then he saw some bad things: some friends die. The depression and the PTSD took hold. He tried to fight through it. Then he injured his back and couldn't heal. The fusion never took, and more vertebrae continued to fracture. I'm convinced that hidden beneath the PTSD, depression, and pain, that there was some sort of psych component that was never identified or addressed. If anything that's what makes me sad.

It's ok if you don't want to read about him. Don't read it. Leave now. Please.

He was my husband, and my life, and every waking minute for the past 13 years. A part of me died too the morning he died. I can't get that back. I'm not just mourning the loss of my husband, and grieving. I've been mourning the loss of my marriage and soul mate over the last year while I watched him slip away. Now it's just that his body followed suit. I'm mourning the loss of a daddy for my girls. The look in his eyes when he held those girls for the first time. Little did they know that he had kissed my belly goodnight every night from the first day we found out I was pregnant with each of them.

I'm relieved for him... because his pain is gone. His flashbacks are gone. His depression has ceased and so has the PTSD. My heart is a little lighter when I think that these are no longer his burdens to bear. My heart is lighter, yet my soul is cracked. How in the world do people survive the loss of a spouse...

Daddy Update #2... and Then Some...

Dad was transferred some point last night from Intermediate ICU to a standard med/surg unit in Stanford. Late this afternoon he was transported to a skilled nursing facility in Palo Alto (a different one from the last time) via non-emergency ambulance.

As usual, there have already been some hurdles since he got there. I guess I should learn to accept these as routine. I haven't. (Trying not be bitter; I promise.)
* pain meds aren't standard in a SNF so even though his doc wrote orders for them, he may
not get any tonight
* he shares a room with a man whose only form of communication is yelling
* this SNF is not set up with sleep equipment (dad has chronic sleep apnea)

Dad is anxious for me to get over to him at his new place tomorrow and help him settle in.

Yesterday I was supposed to have another all day meeting, but that was shot to hell as Hwy 9 was closed, and so that didn't happen. I couldn't get Nat or Emi to school either. So they came with me to see Dad yesterday at the hospital. Today I had meetings in Burlingame and carpooled with two co-workers. Tomorrow I'm supposed to be back at the Santa Cruz office, for a very important meeting, and then need to take Nat to her piano lesson at 4. I don't know how I am going to do all of that AND get to see dad.

OH! and tomorrow night is also open house at the middle school for Lu and I should (be a good parent and) go. I don't know that I have it in me to go. That was always James' thing. He was the social one. He could chit-chat and small talk and have a grand ole time. Me- not so much.

I finally made some much overdue plans to have dinner with two really good friends for Saturday night at my house. I'll host and make a salad. They bring the lasagna and bread. My big girls are supposed to be going to Jonas Brothers concert Saturday night with a friend. A few hours after I finalize the dinner plans, I get a note from the friend's mom that actually, they are not sure they will be able to take the girls :( They wonder if I could take them instead. Um.... I guess I could except...
1/ I hate crowds of people and the panic attacks I get,
2/ It's the whole lack of breathing, thinking I'm dying thing that freaks me(and others) out
3/ I finally have dinner plans with these two great gals that night, and
4/ I hate the Jonas brothers.

I just don't want another disappointment for the girls again, you know? They are REALLY looking forward to this concert, and have been for the last 2 months. I mean they wrote it on the calendar and have a count down and everything. I thought I was directing(micro-managing?) their lives enough to evade most of those now. I make few but important promises, and I always keep my word. I hate it when other people can't.... and my kids are caught in the middle.

Darn it.

Daddy Update #1

Dad needed another surgery today. The left leg (which had a large 'flap' taken out to fill in his arm) is the source of all the recent problems instigating septic shock et al. After Friday's surgery to debride this area, they were unable to close it, so they put two wound vacs on it for the time being. Today they took Dad back into surgery to hopefully close the left leg wound. Didn't happen, at least not as planned. Ended up being another looooooooooong surgery. They couldn't close the left leg, so they had to graft another skin graft from his right thigh to help close the left thigh.

Overall, besides the new pain from today's surgery, dad is better. Physically, mentally, and spiritually. Not that dad is all that spiritual. I just mean, it seemed like he lost his spark there for most of the past week, and that scared me more than anything. But this evening it was back, along with his sense of humor, and almost funny jokes ;)

This is *hopefully* the last surgery that Dr Sen will need to do. He is the surgeon who did the reconstruction of the arm, and showed up on a moment's notice to the ER ready to go on Friday. He is a saint as far as I'm concerned. I've been weary of broaching the next subject with his doctors yet: the thoracic surgery for the lung cancer. Maybe we just need to cross that bridge when we get to it. I'm ok with that. I can't handle much more than one day at a time anyhow.

For now, dad remains in Stanford Intermediate ICU. He'll need at least 5 days to recover from today's surgery. Then we'll game plan again.

Onward!

The No Bueno Edition

I have been putting this off for a long time. Ugh. So here we go.

My dad is not well. He had surgery on Aug 13th to take out about 5 inches of his ulnar bone in his arm (near the wrist) where the cancer started. That surgery seemed to go well. In that surgery they also took out all the surrounding structures: muscles, tendons, arteries, nerves, nerve bundles, etc. On Aug 23rd he had another surgery to 'harvest' about 17 inches of muscle, fat, tendons, arteries, and nerves from his left thigh to then try and fill in the marked divot in his right arm and hand. He was in the hospital for about a week following this. He has a special protective splint on his arm. He is not able to use this arm at all. He was eventually placed into a nursing home near the hospital. Mainly because there is no one at home to help take care of him. Here's where things start to get dicey:

TUESDAY: I pick dad up from the nursing home to take him to his oncology appt in Santa Cruz. He is unable to walk. At all. Cannot bear weight on the left leg, Cannot do a damn thing to be perfectly honest. I figure it's just par for the course considering he also had major surgery on his leg to donate to the right arm. At the oncology appt I look closely at dad's arm and leg. They look good actually. I'm not an expert, and I'm not a doctor, but I've seen my fair share of gross surgery sites with all of James' back surgeries, and I also work in a hospital. Dad's leg wound is flat and straight, not swollen, and you can see a large void in his thigh where the muscles and such were taken from. (On my own I email dad's OTHER oncology doc, who is overseeing the entire care, and I also email his surgeon to tell them Dad cannot walk, and I think this is unusual.)

WEDNESDAY: I try to call dad at the nursing home. His roommate answers the phone and tells me there's no Mark, and hangs up. Swell. I call the nursing desk and they take the portable phone to him, but it's too far from the nursing desk, so the reception cuts out. Swell. I ask is they can wheel him out to the nurses station so I can talk with him, but he is not up to it. Shoot.

THURSDAY: I try to call dad's room again. No success. I call the nursing station again and go through the same exact scenario. Finally I tell them that I am just confirming they will be able to take him to his post-op appt on Friday with the surgeon at his office. They say yes, it's all set up, and they can transport him in the special van so he can stay in the wheel chair the whole time. Ok. Great. I said, please tell my dad that I will meet him at his doctor's appt tomorrow at 1145. ok.

FRIDAY: I get to the doctor's office at 1120 in case they get him there early. I don't know if they will help wheel him in or what, I want this to be as smooth as possible for him. At 1130 I go upstairs to the doctor's office and ask if he has already checked in. No, he hasn't. Ok. Back downstairs I go. And I wait. And wait. And wait. At 1150 I get antsy. I know these doctor's time is precious. But of course I don't have the nursing home # on my cell phone. I left it on my desk at work. I text my sister in law and ask her to google the #. She sends it. I call. And say, "My dad is supposed to be here for his post-op appt. I'm here waiting and he's not here yet. It was supposed to start 10 minutes ago." They fumble around a little bit. "Sorry. Guess we forgot to call you. Your dad was having complications and sent to the ER." Seriously!?!?!?!?!?! Instead of high tailing it to the ER, I have a rational moment. I go back upstairs and ask to take my dad's appt slot with the doctor. The front desk folks are a little caught off guard, and don't think they can make this happen. I ask to speak with the MA. She says she'll need to talk with the doctor first. Fine. Whatever. This is a good doctor. It's in his best interest to know the details of this patients.

I meet with the doctor. We talk about the emails we've been sending back and forth since Tuesday. I tell him dad's been coherent, and both surgical sites looked good on Tuesday. I do express concern about what I perceive to be lack of care or not enough care for dad at the nursing home. We agree that I will go to the ER and I will email him ASAP with what I see. OK

I get to the ER. Which is a process unto itself. Parking is almost hidden. You have to be screened by a security guard to even get into the waiting area of the ER. Then wait in line. Patiently. Or as patiently as possible. I finally am taken back to see dad. He is pale, and sweating. He is shaking. He recognizes me, but can only mutter DUPLICATE over and over and over again. No other words. He moans in pain, his eyes roll back in his head. His blood pressure is sky high. I look at dad's arm and it looks fine. I look at dad's leg and it is awful. So SWOLLEN and red and angry and leaking. It's about 3 times as large as his leg should be. And he has a fever of 103.7.

I email his surgeon and say: HE IS HAVING TROUBLE TALKING. NOT CLEAR. LEG LOOKS SIGNIFICANTLY WORSE TO MY UNTRAINED EYE. :(
I sent that at 1:08. I guess Dad had just gotten there a little bit before. They start taking blood samples and arranging for a CT Of his leg. There's quite the flurry of ER docs around him. I'm trying to be quiet in the corner so they don't think I'm in the way and ask me to leave. I'm trying to listen and comprehend the words and terms they are using. Just filing it away, to draw from later. At 1:28 I see his surgeon (who, by they way I'm borderline in love with for taking such fast action) with his scrubs on, and his surgery team walk in and take over. (That means he got my email, upped and left his office practice across town, and came here.) Oh sigh of relief, at least for the time being.

They do a thorough work up of dad. CT of leg is positive for a massive hematoma in his leg. (Pooling blood) which probably started small, and ended big, and along the way became massively infected. He's acutely ill in septic shock. His kidneys have shut down. He is delirious and they order a CT of his brain. This comes back negative, everything looks fine, no stroke, just probably the sepsis and the fact that his kidneys aren't working and can't filter out any of the toxins. The next few hours are a daze as they take him in and out testing, more samples of this, shots of this, IVs of that. Papers, explanations, ICU consults, my signing as his next of kin, authorizing consent for surgical and medical intervention in the event they need to preform life saving measures to keep him alive. Oh shit. Here we go.

After 4 units of blood,4 bags of plasma, 2 bags of IV fluids, several shots of vitamin K to help his blood clot, and some other things I think I've forgotten, his surgeon and team take him into the OR. While in there they re-open his leg and find 4 units of infected blood that has infected his leg from his knee to his groin. They infuse an additional 3 bags of blood, and 3 bags of platelets, and debride (scrape and remove) all infected skin, tissues, muscle that has made him so ill. He will need at least one additional surgery in a few days to close the leg wound.

After a few hours which seemed like DAYS upon DAYS.... the surgeon emerges and says he thinks they have gotten to the cause of the problem. They were not able to close the leg, so two wound-vacs have been placed to keep draining the surgical site. I am able to see dad a bit later in the Stanford ICU. He is still confused. But not in any pain.

SATURDAY and SUNDAY: Dad remains in Stanford ICU. He mentally seems better a little bit each day, but is easily confused, and still not clear on what has happened, where he is, or why. His kidneys begin to work a little bit and this is encouraging. His blood pressure does not seem well controlled and gets high often, which they then treat. His fever is now gone, but his blood sugars are way out of whack requiring insulin, which he has not needed before. His hematocrit is better but not great. They debate another blood transfusion, but decide to hold off for now. Sunday night he is deemed enough better to 'graduate' to INTERMEDIATE ICU. Fantastic. I accompany him there for that move, and leave late again.

MONDAY (today): I get a call from dad (this is BIG! this means he is with it enough to know to call me, AND they let him use a phone!) he tells me that he is still confused, and he is not doing well and is in an excruciating amount of pain. Let me tell you: these are strong words to come from my father. He NEVER complains. EVER. I tell him I'm leaving now and will be there in an hour. I spent several hours with him today and not for one moment did he have any pain relief. (It looked like labor actually.)He was more alert, still confused but less than yesterday, and he moaned in pain the entire time. Oh daddy. :( As of tonight, he still resides in Intermediate ICU.

I don't know when he'll get back to the OR.

I don't know when or if he'll be strong enough to be discharged from the hospital to a skilled nursing facility.

I don't know when he'll be able to get another round of chemo in Santa Monica. If he has more than a 6 week lapse, he will be dropped from the study.

And I don't know that he will ever be strong enough to have the next surgery, which was supposed to be a thoracic surgery to take the 4 cancerous tumors from his left lung.

There is not much to be done by waiting friends and family. Just pray. A LOT. Especially for his pain relief. He is not up for visitors. Well wishes are best sent either through me, or to his voicemail.

And let me just say, that I am officially NOT A FAN OF LABOR DAY WEEKEND. ARGH!!!!! This is the same weekend last year when James' downhill slide started.

Please don't let this be a repeat. :(