Sunday, April 28, 2013

Looking Up

We are finally home after the heart scare. It turns out by day 4, 5 Phil was able to breathe normally and with a lot less pain. The drs decided on letting Phil heal on his own, as opposed to testing the fluid. He is on a new anti-inflammatory medication that seems to be helping. The drs also gave Phil neupogen and epogen shots daily to boost red and white blood cell production. Amazing how much they have helped him in the past.

It was a really hard to go back to that hospital, walking those same halls. Seeing the same nurses, the endless doors and halls of sick and suffering people- the countless drs that have helped us, eating just a table away from me at the cafeteria, both of us pretending we do not know each other at all. Some of them have treated us less then well in the darkest moments, some have been so good to us. What would we have done without all of them?

Where I have breakfast outside at Kaiser...

Mom has been there for us during this hiccup and helped us beyond any words I can find. Dad flew in last night (day we got home) and we have tried to relish the day and a half we have with him. We watched the Sharks game tonight, a comforting tradition for us. Tomorrow early in the morning they will drive back home to Arizona. The money they have spent on flights and gas. Can't think about it because the guilt will kill me. Not to mention their time, energy and emotions.

It hurts us that our nightmare has effected friends and family so much. Our closest friends/family have experienced some version of a breakdown and/or are trying to keep themselves from having one. They have their own frustrations and battles within their own lives, yet we are still needing to reach out to them. I want to believe this is the end of the really bad stuff. Over and over I tell myself not to get my hopes up when Phil seems to be crawling uphill. We all need to see Phil rebuild, it will fortify us.

Mom bringing Phil McDonalds to the hospital... She would go out and get him whatever he was craving. Too much!

Me giving mom a french manicure today...

An amazing picture I love, taken a few weeks ago at the hospital. Mom and Dad have faced so much hardship in their lives, but have worked through it all with Jehovah's help. What would we do without them? This is mom's "shy" camera face, she hates smiling for pics ;) Get a room!

I think all I can do is not pressure myself to feel anything but what comes naturally. If I want to hope one day, I will. If I worry, nothing I can do about it. I'm trying to focus my energy into praying more, in thinking about the countless beautiful things Phil and I still have around us. This whole experience could have been earth shattering financially if Phil hadn't gotten such an amazing job with the City of Palo Alto and thus, great insurance. So many people go through cancer and are left with millions of dollars in debt by the year long mark. We have family and friends who never cease to help, we live in a beautiful state that pushes it's sunlight on us no matter what. The rays squeeze through the blinds over and over, they say get up and try again. Above all we have faith that these hardships will all be a thing of the past, and so many amazing days are ahead. Hope is everything, is it not?

And of course, we have our love. The love that none of our words can express, but can be felt in simply holding hands while I sit beside his bed. We sometimes find it hard to look in each others' eyes as we did when the days were lighter. But in the moments we do, there is something grand there- something oddly enough, I have to thank cancer for.

Phil is able to sit up now, and I encourage him to do it as much as possible. His heart and lungs want to be upright and those were the drs' orders. It is hard to be motherly in my constant encouragements. I can imagine it must be annoying to be pushed when you want to curl in a ball. But at some point in our lives we must be pushed, and right now it is Phil's turn. I have no intention of rushing him, but he IS young and his body wants to heal. Small steps lead to bigger ones and I think maybe we are on that path now.

He is def suffering from depression, and I do not push him to do things he can't face. It has been one thing after another, so right now I'm just letting him be, in that department. Soon enough I will take steps to help him get emotional support. But right now, it will feel good just to BE. Tomorrow morning we get a little visit from the C.O and an elder, which I know will be a great encouragement to both of us. Monday we go in to get another heart echo for Phil, so they can track the progress of his healing. They will be able to see if the fluid has gone down at all and move forward accordingly.  He did so well today, it seems that his body is better. I am enjoying the moments he smiles, tells a dry joke like the healthy Phil does. It is new, and wells my heart up with hope.

Thank you all for your continued support.
I'm sorry if I have neglected to write, text, call. Please know your messages are coming through and saving us. For some reason I am finding it almost impossible to give replies at the moment. Saying any extra words, connecting - I'm just so tired. I will get better, I think I just need to breathe for a bit. I love you all, thank you for loving us.

Wednesday, April 24, 2013

Fighting Through A Set Back

Last thurs phil finished his last chemo. It went pretty good. Leaving the hospital was very emotional for us but esp Phil. We gifted Stan's donuts to the oncology nurse staff and got out as fast as we could. A surreal feeling, as mom, Phil and I realized this would be the last chemo of all. We ordered a feast of Indian and Persian food to celebrate, and Phil's spirits were quite good regardless of post chemo side effects.

 Unfortunately, Monday Phil was experiencing unbearable pain and pressure in middle of chest. The kind he had once before when his heart was surrounded in fluid. After making dr appt that aft we were informed to go straight to er. His heart rate was 167- "the rate of a marathon runner". Obviously that's horrid to hear. Worse he could barely move without keeling over in excruciating pain.

Finally we got a room in er. Dr on call reminded me of House (except for the Hawaiian shirt) and he picked away at phil w questions over a few hrs, and finally figured out the problem. After xrays, EKG, cat scan we were informed that it was indeed pericardial effusion - fluid around the heart. Also another weird thing, the fast heartbeat was caused also by an abnormality in his heart called SVT. He has two "pace makers" in his heart, where everyone else has one. This means his rate can go through the roof because there's a confusion of rhythms. Obviously the two issues exasperated each others symptoms., I was just happy it wasn't a blood clot.

 Phil was given a med to bring heart rate down. Dr said usually the heart catches on and springs back into rhythm- amazing and it has def happened by today. He is down to 100ish, which is kind of high for average person but low for him.

 After being watched until late that night we were moved to telemetry on level 2. I requested a private room as we have been scarred by the crazy man we shared a room w last time this happened, and we got a room way off and behind high traffic areas, a great bonus.

Yesterday he had a heart echo and yes the fluid is still there. There was talk of draining the liquid or at least biopsy to determine if it is malignant. Phil's blood had dropped from 9 to 6 overnight. His white blood cell count is also not so pretty, so these two issues made the sticking of a needle into the tiny section surrounding his heart very dangerous and risky. He could bleed internally and easily get can infection with which he couldn't fight. So basically its a waiting game to see if fluid dissipates on its own as it did before.

We are frustrated because there are differing views on how to treat the PE from the Oncology drs standpoint and the cardiologists. Oncology is pushing for sample (sticking a needle into fluid surrounding heart), cardiology is saying no way too big of a risk. Phil and I have agreed that he is too broken to fix right now, he couldn't handle another life threatening procedure after months of getting weaker and weaker. Phil says that he wants to wait it out to see if it continues to dissipate as it did before, and I fully support that. He said his breathing is already a bit easier this morning, and his counts are back up too :)

A secondary heart echo will be performed tmrw and we will then determine if the meds Phil is taking are indeed bringing the inflammation down. I have a feeling things are headed in the right direction and the results will be positive.

When we left after chemo we really believed that was it. Phil is passed keeping upbeat, its impossible now for him. he has been beyond the definition of brave for so long, now he is just trying to stay alive. It hurts to talk or even reach for a glass of water so I'm trying my best to help any way I can. Prayer is keeping us sane.

Mom has been helping a ton, dads coming Saturday and they leave Sunday. I'm hoping were back home before then. They want to keep him here another few days, so we are just following orders. Phil's appetite is good, which is great. He's lost more weight so we need to stuff him with whatever he craves.

 Not much more to say, just thank u for keeping up to date. Much love, Hollie.

Thursday, April 11, 2013

LAST CHEMO and stent removal

Tomorrow Phil goes in for an endoscopy where the Drs will remove his stent for good. I have a feeling IT is what has been causing Phil the pain in his chest, so we are so glad to get it out. We will know for sure if it is the culprit once it is removed and the inflammation from the procedure has gone down. It starts at 8:30 tomorrow morning, then he will stay overnight and start chemo the next day. I wish they would wait a few days, and let the stent area heal up a bit. His chest hurts alot after they've messed with the stent. I'm going to suggest it, if they don't think its necessary then I trust them.

Mom and Dad are driving up on Saturday and it will be such a huge help for me and emotional pickup for both of us. Dad will stay for the weekend, mom will stay longer. SO HAPPY.

I have contacted Phil's psychiatrist with a list of questions and am waiting for his call. He specializes in drug dependency and depression. Phil really liked him the one time he met, and I'm happy it was a good fit from the get-go. Phil hasn't been back to see him because he's been incapacitated with fatigue, but it will be the next step after chemo is finished. I will push for at least 2 wks of a break from any treatment, not weaning off of anything yet- then when Phil has had a breather we can face detox together with renewed energy. I'm not sure if our Dr will approve of letting Phil continue to take his high doses of dilaudid and opana for a while after chemo, but I think with all that he's been through- let him dull the pain a little longer till he can actually function enough to face the next wave of hell.

Have any of your families dealt with prescription drug dependency and detox? I have been looking into inpatient clinics, and also outpatient. When opiates are involved it is very serious and needs supervision and guidance, also a watchful eye on heart rates, etc because the body reacts quite drastically and for a long time when you take it away. I am praying that we will find just the right fitting procedure for Phil. He needs extra loving care physically and mentally through this. Many times Phil has told me that I'm his reason for fighting- and although thinking about dealing with detox now really instills panic in me -I've committed in my mind to being there by his side everyday, no matter how long it takes to get back on his feet. I never want him to feel he's alone, and he needs my affection and encouragement- even if it is just holding his hand. I can't imagine what it is like to go through detox. I've only seen it in movies, and we did taste a bit of it when Phil tried going cold turkey off of opana alone a few months back. It's traumatizing to say the least.

I did say I wasn't going to talk about it...
Anyways, right now I would love any advice or experiences in this field that you have. 
I don't know anyone who has done detox of any sort. I'm feeling quite lost.

I will be in and out of the hospital for the next week, and I'm not sure how Phil will feel as far as visits in the hospital but I will keep you in the loop. Either way, he likes visits later in the day, dinnertime or after. He doesn't sleep at night, so he sleeps all morning and afternoon. I sleep in with him, as I am running downstairs and getting him snacks throughout the night and helping him while he vomits or even just sit beside him while he watches TV. If you'd like to contact me, text is the best bet. Sometimes however, I like to have breakfast and coffee with you guys, I find it a nice treat to have McDonalds breakfast, or Sam's Donuts ;) - I am pretty sick of the hospital food at this point. So is Phil. If you feel like eating with us we will pay you back - we're always down for Chilis, Chipotle and Phil usually wants a burger from In and Out, or pizza later at night. 

We love you all and I want to thank you dear ones who have sent us gifts in the past few days! They have really been a magical treat!! Check out a few pics of things we have gotten from friends. Note I haven't taken pictures everytime we get a gift, so some of you might feel left out - but please know we love them all the same!!!!

From Julie Dunne!

Not gonna lie I had 3 today!

From Dan, Sue, Kepryn and Chloe!

So much love to you all
I'll keep in touch.

Saturday, April 6, 2013

This was near the beginning
One of my favorite pictures ever.

Friday, April 5, 2013

A Long Day

How are you all? 
I'm not sure what to write tonight. It's impossible to see the light at the end of the tunnel on days like this. I miss talking to my husband when he can really hear me. I miss looking up at him walking next to me. I know he will get better, but it's taking so long. We are both broken and I pray weakly for the glue needed each day to put things back together enough to cook a meal, tuck Phil in comfortably on the couch, or to somehow laugh about something. You have been there in texts and I thank you SO much for that. We have been getting gifts from you dear ones as well- they really bring so much light to our long days. Although I don't have the energy to write you all individually at the moment, please know I'm getting your emails and that they are keeping me going. Phil is unable to stay awake or focus enough for me to read them to him. But as his caretaker, you are feeding my soul and thus I can continue to give Phil what he needs.

Mom and Dad are coming in a week to help with Phil's last chemotherapy. That sounds so weird to say. He has gone through 9 or 10 I can't remember. But by the end of the month he will be finished. Then it will be detox. Once again I'm not thinking about it yet. When I look in the mirror I see someone I don't recognize. My skin is ragged with lines and bags under my eyes because I don't sleep at night. Phil cannot look at himself at all. He can barely walk to the bathroom without almost falling over or tripping. He is barely a human, a shadow of the man I knew. He hasn't been wanting to eat much, though I am trying to make him what he wants. I have seemed to lost my touch for cooking like I used to. Messing up recipes that were thoughtless staples. I have bought food with intentions of cooking Phil healthy meals but I can't do much more then stare into the fridge with my eyes glazing over. 

Thank you all for your amazing comments at the meeting tonight. We were listening in, and I couldn't help but cry because Jehovah was recharging our batteries yet again with the perfect scriptures about getting through hard times. We are all just getting by. I know this is a very honest post, but please don't worry- we are ok. Phil's cancer is gone and that is the most amazing thing on this earth to us. Soon enough we will be living again.